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Multilevel influences of care engagement and long-term survival among childhood, adolescent, and young adult cancer survivors
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Multilevel influences of care engagement and long-term survival among childhood, adolescent, and young adult cancer survivors
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Content
Copyright 2023 Dalia Kagramanov
Multilevel Influences of Care Engagement and Long-Term Survival Among
Childhood, Adolescent, and Young Adult Cancer Survivors
by
Dalia Kagramanov
A Dissertation Presented to the
FACULTY OF THE USC GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
(PREVENTIVE MEDICINE (HEALTH BEHAVIOR))
December 2023
ii
TABLE OF CONTENTS
LIST OF TABLES……………………………………………………………………………….iii
LIST OF FIGURES..……………………………………………………………………………..iv
ABBREVIATIONS…………………………..…………..……………………………………….v
OVERALL ABSTRACT………….……………………………………………………………...vi
INTRODUCTION……………………………………………………...…………………………1
OVERVIEW OF STUDIES & IMPLICATIONS……………………………………………….15
CHAPTER 1: Influence of Care Experiences on Health Care Practices of Young Adult
Childhood Cancer Survivors (YACCS)………………………………………………………….17
Introduction ………………………………………………………………………...……17
Methods ………………………………………………………………………………….22
Results……………………………………………………………………………………26
Discussion………………………………………………………………………………..38
Strength & Limitations ………………………………………………………………….43
Conclusion & Future Implications……………………………………………………….44
CHAPTER 2: The Impact of Health-Related Beliefs on the Cancer and Survivor Experience:
A Qualitative Analysis …………………………………………………………………………..46
Introduction ………………………………………………………………………...……46
Methods ………………………………………………………………………………….53
Results……………………………………………………………………………………56
Discussion………………………………………………………………………………..63
Strength & Limitations ………………………………………………………………….66
Conclusion & Future Implications……………………………………………………….67
CHAPTER 3: Impacts of Neighborhood Acculturation and Socioeconomic Status in Relation
to Long-Term Survival of Childhood Cancers Diagnosed in the State of California Between
2006-2020………………………………………………..………………………………………69
Introduction ………………………………………………………………………...……69
Methods ………………………………………………………………………………….75
Results……………………………………………………………………………………80
Discussion………………………………………………………………………………..86
Strength & Limitations ………………………………………………………………….90
Conclusion & Future Implications……………………………………………………….92
REFERENCES…………………………………………………………………………………..93
APPENDIX…………………………………………………………………………………..…108
iii
LIST OF TABLES
Table 1: Descriptive Characteristics of Project Forward Qualitative Analysis Sample…..…….27
Table 2: Project Forward Participant Age Breakdown …………………………………..……..28
Table 3: Emergent Themes, Subthemes and Exemplar Quotes from the Qualitative Transcript
Analysis of Care Experiences………………………………………………………………..…..36
Table 4: Emergent Themes, Subthemes and Exemplar Quotes from the Qualitative Transcript
Analysis of Health Beliefs ……………………………………………………………………....62
Table 5. Descriptive Statistics of The Ethnic Enclave Data Sample, N=32,693 ……………….81
Table 6: A Univariate Cox Regression Model of Ethnic Enclave Change in Relation to
Overall Survival For the Full Data Sample (N=32,464) of CCS Diagnosed in
California Between 2006-2020…………………………………………………………..………82
Table 7: The Multivariable Cox Regression Models of Ethnic Enclave Change Over
10-Years in Relation to Overall Survival for the Full Dataset (N=32,464),
Those with Highest Census Certainty (N=31,576), and Hispanic CCS Only (N=16,037)
Among Those Diagnosed in California Between 2006 and 2020. ……..………………………..84
iv
LIST OF FIGURES
Figure 1: Multiple levels of influence along the cancer care continuum……………………...105
Figure 2: Adaptation of the continuum of care framework for YACCS survivors – A
representation of the levels of influences explored in the dissertation……………………...….105
Figure 3: Example of COG surveillance guidelines for survivors at risk for cardiac disease…106
Figure 4: Cancer care continuum re-modeled as key themes and subthemes from transcript
analysis of cancer care experience study ………………………………………………………107
Figure 5: Cancer care continuum re-modeled as key themes and subthemes from transcript
analysis of health beliefs study ………………………………………………………………...107
v
ABBREVIATIONS
AYA – Adolescent young adult
CCS – Childhood cancer survivor
SEER – Surveillance, Epidemiology and End Results Program
SES – Socioeconomic status
nSES – Neighborhood Socioeconomic status
YACCS – Young adult childhood cancer survivor
vi
OVERALL ABSTRACT
Engagement in follow-up care remains an issue among survivors of childhood cancer
who are at risk for late effects of therapy such as chronic disease, psychosocial complications,
and early mortality. With the understanding that consistent engagement improves the likelihood
of early detection and prevention of ailments in this vulnerable population, attention to this
matter is imperative to improving health outcomes. While there may be clarity in the literature on
the components that create a good cancer care environment (i.e., strong family support,
consistent insurance coverage, and positive physician relationships), there is a need for greater
exploration of the macro and micro-level risk factors that prevent survivor care engagement.
Without a clear understanding of layers of influence and the way in which they may
interconnect, intervention strategies will continue to fall short. The following dissertation utilizes
both quantitative and qualitative data to explore the components of past care experience, health
beliefs (including cultural, religious, and spiritual), neighborhood socioeconomic status (nSES)
and acculturation in relation to care engagement and health outcomes. Moreover, these studies
make use of the cancer care continuum framework as a tool to organize the macro and microlevel influences related to the cancer experience. Using qualitative data, chapter one identified
that the relationship between YACCS care experiences and care attendance was influenced by
the individual’s experiences, their family/social support systems, providers/teams, organizations,
and macro-environmental factors. Chapter two identified that YACCS health beliefs were
influenced through the individual, their family/social supports, and their local community
environment. Survivor voices described important associations between their held health beliefs
and care behaviours such as attendance to follow-up care. Lastly, chapter three identified
associations between neighborhood acculturation changes and long-term survival among CCS,
highlighting that remaining in a neighborhood of high acculturation was most protective to
overall survival. These findings provide important insights on many influential factors related to
the cancer experience, outlining their interconnectedness and impact on care practices of this
vulnerable population. Information from this work can be used to support intervention strategies
aimed at improving follow-up care attendance and long-term outcomes.
1
INTRODUCTION
Cancer Care - The cancer care continuum begins at prevention and stems all the way to
end of life care (Taplin et al., 2012). In between, it involves screening, treatment, follow-up,
counseling, surveillance, and survivorship. It is a complex range of care opportunities that are
surrounded by several levels of influence (Figure 1). Cancer care can be impacted contextually
spanning multiple layers (Taplin et al., 2012) (Zapka et al., 2003). The layers of influence on the
cancer care continuum include the individual patient, family and social supports, provider/team,
organization and/or practice setting, local community environment, state health policy
environment and national health policy environment (Zapka et al., 2003). There are also several
contributing factors within each layer, such as knowledge and communication skills for
providers/teams, and socio-demographic factors for patients themselves.
Each level of influence is linked to the quality of cancer care individuals receive. In turn,
improved quality of cancer care will result in the improvement of cancer-related outcomes
(Taplin et al., 2012). It is likely that improvements in care quality would support an individual in
making the right health decisions for their needs (i.e., obtaining consistent follow-up care as a
survivor), leading to better overall outcomes.
Individual fields of research such as health policy, health behavior, and health services
have well examined these levels of impact independently (Taplin et al., 2012). However, there is
limited work that explores the interaction between these layers and the role they play on patient
care, engagement, and outcomes (Taplin et al., 2012). For instance, levels of neighborhood
socioeconomic status can influence family dynamics and social support networks (Thompson et
2
al., 2016), which can then impact the attitudes and beliefs of the patient, changing motivation for
care and potentially future outcomes(Cicero et al., 2009).
Additionally, the focus of cancer care context research thus far has been predominantly
with cancer patients during the phase of active therapy. However, the continuum of cancer care
spans well into survivorship, where multilevel aspects also play a role. There is an evident
imbalance of studying the depicted framework (Figure 1) among cancer survivors compared to
what has been examined in cancer patients. Survivorship care engagement among childhood
cancer survivors is critical to the long-term health and outcomes of this population (Tevaarwerk
et al., 2018). Thus far, care engagement levels remain below what is recommended for consistent
follow-up and surveillance against morbidity/early mortality (Milam et al., 2015), (Nathan et al.,
2009) - highlighting the need for a greater understanding of the levels of cancer care influence on
quality of care, care engagement, and health outcomes.
Childhood Cancer Survivors - Each year, approximately 15,000 children are diagnosed
with cancer in the United States (US Cancer Statistics Working Group). With technological
advancements and improved treatment modalities, survival rates are now well over 70% (Curry
et al., 2006). This has resulted in a growing population of long-term survivors who face unique
challenges because of their prior cancer. Long-term impacts of cancer, commonly termed late
effects, can include recurrence of disease, new malignancies, cardiomyopathy, psychosocial
complications, and early mortality because of lifesaving therapies (Hudson et al., 2003), (Nathan
et al., 2009).
3
Consistent, survivor-focused care engagement is imperative for this population. However,
as mentioned, research shows that adherence to guideline recommended surveillance and
attendance to consistent follow-up care remains sub optimal (Nathan et al., 2010). A crosssectional study of childhood cancer survivor healthcare use in the preceding two years of
reaching 5-years cancer free reports that only 31.5% received survivor-focused care, and only
17.8% received care that included advice on risk reduction (Nathan et al., 2008). The likelihood
of receiving survivor-focused care also decreases for vulnerable populations such as Hispanics
and African Americans (Casillas et al., 2015).
Young Adult Survivors of Childhood Cancer (YACCS) - For the “average” person, their
adolescent and young adult years of life are known to be a difficult time of change, as one
attempts to leave behind their childhood dependence, and enter the independence of the adult
world. For an adolescent or young adult survivor of cancer, this multifaceted stage becomes
increasingly more complex. Over 60% of YACCS report having at least one chronic health
condition (Oeffinger et al., 2004). Compounded with common risks for late effects from cancer
treatment, YACCS face distinct difficulties navigating survivorship during these stages of life
(Oeffinger et al., 2004). Research has highlighted that a young adult’s prior cancer has shown
negative impacts on finances, body image, career plans, relationships, family planning and
general control over life (Bellizzi et al., 2012). The literature also suggests that young cancer
survivors are more likely to have poor nutrition, lack physical activity, and be addicted to pain
relievers, compared to their healthy peers or sibling (Carpentier et al., 2008). Experiencing such
obstacles has a critical impact on quality of life and health outcomes.
4
The cancer care continuum figure previously described (Figure 1) is applicable to the
YA-CCS, who are also influenced by factors such as socioeconomic status, insurance, race and
ethnicity, cultural beliefs, and health-care experiences. For instance, a study that assessed
adverse health status of childhood cancer survivors found that lower educational attainment and
an annual income under $20,000 were associated with an increased likelihood of reporting at
least one adverse health status domain (Hudson et al., 2003).
Other relevant aspects of the cancer care continuum include individual cancer care
experiences (provider/team, organization/setting), culture (individual patient and family/social
supports), socioeconomic status and ethnic enclave (local community environment). These micro
and macro level components of the cancer experience will be expanded on in more detail below.
Cancer Care Continuum for YACCS - The illustrated relationship between influences of
cancer, quality of care, and health outcomes can further be modified and expanded upon for the
YA-CCS survivor. These individuals face unique obstacles and risks across their remaining
lifespan (Bellizzi et al., 2012). Figure 2 describes the linear relationship between CCS/YA-CCS
survivors, care engagement, adherence to surveillance, and prevention of early mortality/disease
(improved health outcomes). As with Figure 1, each of the levels of cancer influence play a role
in bettering or worsening care engagement for survivors, as a result, impacting their long-term
health.
Follow-up Care and Adherence to Surveillance - Surveillance for late effects is an
important component of long-term health for YA-CCS. To mitigate the risks they face from prior
5
treatment, consistent follow-up should be used for prevention and/or early detection of disease.
In 2003, the Children’s Oncology Group in North America published a set of long-term followup guidelines for survivors of childhood, adolescent, and young adult cancer (Children’s
Oncology Group, 2013). The guidelines were created to encourage surveillance for common late
effects such as cardiac dysfunction, colorectal cancer, and breast cancer (Children’s Oncology
Group, 2013). This is done by outlining the necessary periodic testing through echocardiograms,
mammograms/breast MRI, and colonoscopies, among other tests. For example, a survivor will be
identified as at risk for colorectal cancer if they have received greater than or equal to 30 Gy of
radiation to the abdomen/pelvis. For this, COG guidelines recommend a colonoscopy every 5
years, beginning at the age of 35. An example figure of COG guideline recommendations is
shown in Figure 3.
Although the importance of surveillance for late effects has been highlighted throughout
the literature, adherence to guideline recommendations remains low among survivors. A CCSS
study conducted in 2010 showed that surveillance for new cancers is very poor amongst
survivors who have the highest risk for breast, skin, or colon cancer (Nathan et al., 2010).
Additionally, a study of 90 Hodgkin Lymphoma survivors showed similar results in that fewer
than 50% of women at high-risk for breast cancer reported having a mammogram within the last
two years, despite the need for annual testing (Diller et al., 2002).
Most commonly, recommendations for surveillance screenings would be provided at
follow-up care appointments. Current models of follow-up care for YACCS survivors may
include care from their oncologist, family physician, a shared-care approach, or a specialized
6
survivor clinic. Those who attend follow-up care demonstrate greater knowledge of treatment
and diagnosis, have more accurate risk perception of late effects, engage more regularly in
surveillance, and have fewer emergency department visits/hospitalizations compared to survivors
who do not attend (Signorelli et al., 2017). The optimal model of risk-based care for survivors
has not been determined, the majority of YACCS receive follow-up from a general practitioner
(Keats et al., 2019). Information on this topic is currently limited for YACCS, however, the
relationship between follow-up care, adherence to surveillance and health outcomes can similarly
be applied to this subset population, highlighting the need for improving follow-up care
attendance. This can be initiated by obtaining a clear understanding of the protective and risk
factors associated with care engagement for YACCS.
Motivation to Engage in Care - Understanding the reasons for care attendance among
survivors who seek consistent follow-up can help provide guidance for future intervention
strategies. Childhood cancer survivors discussed access to important health information about
late effects and feeling indebted to the physicians who cared for them during cancer treatment as
important factors associated with follow-up care (Knighting et al., 2020). A recent study
conducted by Szalda et al. identified that parental involvement in health care decision-making,
increased comfort speaking with providers about health concerns, and higher levels of
motivation were associated with the continuation of survivor-focused care among YACCS
(Szalda et al., 2017). This study also highlighted the importance of appropriate transition
between pediatric care and adult institutions as a key contributor to engaged adolescent survivors
of childhood cancer (Szalda et al., 2017). YACCS generally experience transition from pediatric
care to adult care (after the age of 18), as well as specialized care to general care – the impact of
7
these changes should be accounted for when assessing engagement with care. A recent
qualitative study of YACCS highlighted some major themes related to facilitating successful
transitions to adult-center survivorship care. The themes included effective communication
(relevant to quality of care), continuity in providers, and individual tailoring of transition (Sadak
et al., 2020).
A common topic across the motivators of follow-up care stem from the relationship
between survivors and their caring physician. A study of health care system related barriers to
follow-up care showed that childhood cancer survivors considered the formation of a positive
physician-provider relationship essential to long-term follow-up care (Howard et al., 2018).
Moreover, the quality of the relationships had a direct impact on the nature of survivorship care
received (Howard et al., 2018). Survivors surveyed for this study also emphasized the
“irreplaceable” nature of the “close relationship” the physician responsible for their childhood
cancer treatment (Howard et al., 2018) – placing additional importance on the impact of
transitioning care. Health care providers also emphasized the weight of creating a positive
patient-provider relationship to improve quality of care (Howard et al., 2018).
Other potential contributors to follow-up care engagement include perception of risk,
health care self-efficacy and support from one’s social network (i.e., financial support, parental
insurance, and cultural belief systems). A systematic review of the literature revealed that
survivors who attended follow-up care showed higher levels of knowledge about their treatment
and diagnosis and had more accurate risk perception of their late effects(Signorelli et al., 2017).
Health care self-efficacy among YACCS, defined as the confidence to manage one’s health care,
8
was also found to be correlated with survivorship clinic attendance and having a regular source
of care (Miller et al., 2017). Although not studied as often in the literature of CCS, cultures in
which health is prioritized as an important value (i.e., within Chinese and Hispanic communities)
may help support a survivor’s motivation to attend follow-up care and maintain good health
status (Ashing-Giwa et al., 2004).
Barriers and Facilitators to Follow-up care and Surveillance There are several wellknown barriers and facilitators of follow-up care and surveillance such as insurance, family
support, socioeconomic status, and physician communication. Figure 1 provides an outline of the
multiple layers of care influence that can be applied to YA-CCS, while Figure 2 demonstrates a
survivor-focused version of the relationship between care engagement and health outcomes.
Within this relationship, all aspects of the cancer care continuum remain at play.
Health behaviors of YACCS have not been explored to the same extent of adult
childhood cancer survivors. This subset of survivors requires special attention due to the unique
nature of the obstacles they face as individuals transitioning from childhood to independent
adulthood (Van Erp et al., 2021). The cancer care contexts that typically apply to the cancer and
survivor experience may be even more pronounced and influential during this period. For
example, social networks in young adulthood play a significant role in the adoption of risky
behavior (Valente, 2010), with the potential to impact one’s willingness to engage in care. A few
of the cancer care context layers will be expanded on below in relation to YACCS and care
engagement.
9
Care Experiences with Provider/Team - Despite existing evidence on the importance of
survivorship care for prevention of late effects, up to 68.5% of long-term survivors do not
engage in any cancer related follow-up care (Nathan et al., 2008). Additionally, YACCS often
disengage from follow-up care when transitioning from pediatric to adult healthcare (Freyer,
2010). Survivors who attend follow-up care demonstrate greater knowledge of treatment and
diagnosis, have more accurate risk perception of late effects, engage more regularly in
surveillance, and have fewer emergency department visits/hospitalizations compared to survivors
who do not attend (Signorelli et al., 2018). Underlining the importance of attaining optimal care
attendance in this population.
Demographic and logistical barriers such as insurance and proximity to clinic sites have
been well examined in the literature as contributors to disengagement from care (Prasad et al.,
2021). However, less commonly explored is the connection between prior care experience,
perception of risk, and follow-up attendance. The way in which an individual experienced cancer
care and continues to experience survivor care can play a major part in follow-up attendance and
overall health.
Care engagement of survivors is likely to be influenced from the beginning of the cancer
experience. Circumstances such as ease of booking appointments and comfort of communication
with one’s provider, each can play a role in one’s likelihood to willingly engage in future care.
While information on this topic is limited for YACCS, research does indicate that most survivors
prefer to receive follow-up care from an oncologist specialist, compared to other providers such
as primary care physicians(Chubak et al., 2014). This may be due in part to familiarity and trust
10
with their original doctor with whom they have built an established relationship (Ramsay et al.,
2018). AYA cancer survivors surveyed emphasized a need for feeling comfortable with their
long-term health care provider (Ramsay et al., 2018), which is an important aspect to consider
when formalizing the transition period from cancer to survivor-care. Likewise, negative
emotions expressed during follow-up consultation post-cancer are often associated with potential
late-effects and reflective of issues in their daily quality of life (Mellblom et al., 2017). An
established physician relationship that can be continued or transitioned effectively to
survivorship care can positively influence attendance. A greater understanding of the reasons for
care preferences and what may be driving them away from wanting to seek follow-up care can
help guide future interventions more specifically.
Provider Communication - Patient-provider communication is another vital component of
healthcare for survivors and is a building block to successful practitioner-patient relationships
and positive long-term outcomes (Ranjan et al., 1995). Patients who understand their doctors
through effective communication are more likely to acknowledge their health problems,
understand treatment options, modify their behavior, and follow medication schedules (Stewart,
1995). Thus, effective communication supports a greater understanding of risk and the necessary
next steps needed by a survivor. Previous work in adolescent survivors of childhood cancer has
shown that health beliefs are directly associated with follow-up care attendance (Lupatsch et al.,
2016) - meaning perception of one’s health status and risk of illness may affect the likelihood of
seeking care. Additionally, effective communication leading to greater patient satisfaction would
increase the likelihood of follow-up care attendance and consecutively, subsequent surveillance.
A study conducted by Zabih et al. in 2019 demonstrated that appropriate patient-provider
11
communication was consistently associated with higher rates of surveillance (Zabih et al., 2019).
There is currently limited information on survivor communication perspectives among YACCS.
Qualitative data that is sourced directly from survivors would provide valuable insight on this
potential barrier to care.
Family/Social Support Systems – Cultural Influences - Cultural disparities continue to
persist across cancer survival outcomes and long-term care attendance (Kahn et al., 2016).
Therefore, experience as a cancer patient and the health-related behaviors of survivors should be
considered in conjunction with one’s cultural belief systems. A literature review conducted by
Gray et al., in 2014 showed that the cancer experience is influenced by many cultural factors
including illness representation, illness attribution, reaction to diagnosis, illness disclosure
patterns and coping strategies(Gray et al., 2014). For instance, in cultures where cancer is
stigmatized, willingness to communicate on this topic is less likely and accepted. Moreover,
survivors may even be blamed for their cancer experience within their culture (Gray et al., 2014)
(Daher, 2012), inevitably pushing them further away from obtaining follow-up care. The use
of/belief in complementary and alternative medicines also varies by culture and can play a part in
symptom management for patients (Gray et al., 2014) (Daher, 2012). Cultural beliefs and the
associated health behaviors that impacted an individual’s cancer experience are likely to persist
in their life as a survivor – making it an important consideration when assessing follow-up care
attendance. Thus far, limited research exists on the impact cultural health beliefs have on
willingness to attend follow-up care.
12
Local Community Environment – nSES & Acculturation - Approximately 25% of
children and adolescents in the United States identify as Hispanic (US Census Bureau, 2020),
which is in line with the diagnosis proportion of new childhood cancer cases among Hispanics
annually (American Cancer Society, 2018). Research shows that Hispanics suffer inferior
survival of ALL compared to Whites despite improvement in overall survival across the U.S.
(Kahn et al., 2016). With regards to follow-up care, several studies also show that Hispanic CCS
are less likely than Whites to remain engaged in care (Milam et al., 2015) (Rokitka et al., 2017).
There are many reasons for the lack of care engagement and ethnic disparities apparent among
Hispanics, however, it is unclear whether the driving factors lie on the individual, community, or
national level. Several studies have explored individual level differences contributing to care
engagement such as insurance status, distance to follow-up, and risk perception, community
level differences have not been well assessed among survivors.
In the general population, neighborhood socioeconomic status (nSES) is a contributing
source of disparity to morbidity and mortality, known to have positive association with health
outcomes (Pickett & Pearl, 2001). Those with lower nSES will often have limited access to
health promoting resources such as healthy food options and safe recreational spaces, making it
less likely for individuals to take part in healthy behaviors such as physical activity (GordonLarsen et al., 2006), (Gomez et al., 2015).
Neighborhood acculturation is the extent to which an area has assimilated to the
dominant culture (Gomez et al., 2015). While this can be measured in many ways, one
approximation is to calculate the proportion of the community that is foreign-born, of an ethnic
13
minority and proficient in the English language (Gomez et al., 2015) (Gomez et al., 2011).
Measures of low neighborhood acculturation indicate an area of upheld cultural norms and
practices that are distinct from the surrounding neighborhoods (Gomez et al., 2011). Low levels
of acculturation within a neighborhood can also be referred to as an ‘ethnic enclave’ (Gomez et
al., 2015).
The ways in which neighborhood acculturation impacts health is less commonly studied,
however, some research points to the idea that ethnic enclaves would likely show low English
proficiency in the community and potentially culturally drive health-related beliefs that influence
care engagement and care practices(Gomez et al., 2015). For example, ethnic enclaves may
involve higher levels of social cohesion, providing access to health-promoting resources through
the relationships developed in well-connected communities (Morenof & Lynch, 2004). This
community-level factor may play a significant role in a survivor’s health behaviors and is worth
exploring as a means of gaining an understanding of this population.
Conceptual Framework & Theories - The three dissertation studies proposed are
guided by the conceptual framework presented in Figure 1, which as mentioned, illustrates
multiple levels of influence along the cancer care continuum. Study 1 looks at the individual
level as well as the provider/team level to assess the influence of care experiences; study 2 looks
at family/social network supports to examine the effect of cultural belief systems; and lastly,
study 3 looks at the community environment level to explore associations between nSES and
acculturation on long term survival. This framework is based on a health-related adaptation of
Engel’s Ecological Model of Influence (Taplin et al., 2012), (Epstein et al., 2003) and is
14
important to this dissertation as it highlights levels of meaningful intervention for cancer
survivors. With the ecological basis of this framework, it can also be assumed that there are
interrelations between the levels of impact – with feedback and reciprocity from each.
With the goal of understanding the ways in which follow-up care interventions can be
improved upon for CCS and YACCS, the framework outlines a hierarchy of intervention levels
for healthcare engagement (Taplin et al., 2012), as well as highlighting the embeddedness of the
individual patient in each of the levels. The application of this concept helps to guide necessary
areas of exploration for survivor follow-up care improvement.
Although the mechanisms by which the levels relate to each other and survivor health
behaviors is not specified, they are each tied to the individual patient. The individual patient can
be examined from the lens of the Health Belief Model to predict health behaviors. The Health
Belief Model suggests that an individual’s beliefs about their health susceptibility, risk, benefits,
barriers, and self-efficacy will help explain their health care engagement (or lack thereof)
(Strecher & Rosenstock.,1997). For example, a cancer survivor who is aware of their risk for late
effects is more likely to have an accurate perception of their health susceptibility and willing to
engage in care to monitor such risks. A study of female cancer survivors showed that in
accordance with the health belief model, cues and triggers were needed to encourage engagement
in behaviors that promote health (Bujawati et al., 2021). Cues and triggers for action may occur
internally (i.e., through awareness of risk) or externally (i.e., through effective communication
from their caring physician).
15
For study one that will examine care experiences, interactions with health care providers
can shape a survivor’s perception of risk and understanding of what needs to be done to take care
of their health. For study two, cultural health beliefs can influence health behaviors of survivors
by shaping the individual’s belief systems, which in turn, according to the Health Belief Model,
can affect health behaviors. Lastly, relating to study three, community level factors may also
play a role in shaping the perspective of the individual patient through their environment. For
example, neighborhoods of lower SES may engage in care less often due to financial or
insurance-related barriers in the community, creating a view for the individual that care
engagement is not accessible or of importance to them. This perspective may shape their health
beliefs of the future regardless of whether they change SES over time.
OVERVIEW OF STUDIES & IMPLICATIONS
Engagement in follow-up care remains a problem among survivors of childhood cancer.
With the understanding that consistent engagement improves the likelihood of early detection
and prevention of ailments in this vulnerable population24, attention to this matter is imperative
to improving health outcomes. While there may be clarity in the literature on the components
that create a good cancer care environment (i.e., strong family support, consistent insurance
coverage, and positive physician relationships) (Kelly & Gibson, 2008), there is a need for
greater exploration of the macro and micro-level risk factors that prevent survivor care
engagement. Without a clear understanding of the layers of influence, intervention strategies will
continue to fall short. This dissertation will utilize both quantitative and qualitative data to
explore the components of past care experience, culture, nSES and acculturation in relation to
16
care engagement and health outcomes. Information on these components will add valuable
knowledge to the realm of survivorship care and the outcomes of CCS.
Study 1 will assess past care experience among YACCS to gain insight on one’s health
behaviors related to follow-up care. Data from qualitative interviews will provide valuable
survivor perspectives on care. An understanding of positive versus negative care experiences
during cancer care and survivorship care may shed light on predicting the likelihood of follow-up
care attendance.
Study 2 will examine the impact of health belief systems on care experiences and future
care engagement. Identification of the protection or risks of health beliefs may have on
survivorship can help future follow-up care interventions avoid or make use of this context.
Study 3 will explore the effects of nSES and neighborhood acculturation on long-term
survival among CCS. Analysis of long-term cancer registry data will help to provide information
on the relationship between these community level factors and the ultimate long-term health
outcome of survival.
17
CHAPTER 1: Influence of Care Experiences on Health Care Practices of Young Adult
Childhood Cancer Survivors
Kagramanov D, Golub M, Miller KA, Freyer DR., Cockburn, MG., Farias, A., Ritt-Olson A, &
Milam JE.
ABSTRACT
Introduction: Young adult childhood cancer survivors (YACCS) face complex
vulnerabilities post-treatment, requiring consistent follow-up care and surveillance. Their
experiences with care throughout the cancer journey and into survivorship can have an impact on
their relationships with healthcare providers, their confidence to pursue care needed, future
willingness to continue care engagement, and overall health outcomes. Objective: Using the
cancer care continuum as a framework for organizing the levels of influence to health care
engagement and future outcomes, this study will analyze YACCS qualitative interviews to gain
insight on survivor perspectives of care experiences and their relationships to cancer-related
follow-up care attendance. Methodology: Patients were selected from The Project Forward
Study, a cohort of young adult survivors of childhood cancer from the Los Angeles County
Cancer Surveillance Program (CSP/SEER). A purposive sample (N=26) was recruited and
interviewed via a semi-structured questionnaire to obtain a representative group across the
domains of follow-up care status (yes/no), ethnicity (Hispanic/Latinx/Non-Hispanic/Latinx) and
reported sex (male/female). The age range at interview was 20-31 years, and 53.8% were male.
A qualitative analysis based on constructivist grounded theory was conducted. Atlas.TI 23
software was utilized for analysis. Results: Five major themes prevailed which paralleled the
levels of the cancer care continuum: The individual, family/social networks, providers/teams,
organizations, and macro-environmental agents. Notable subthemes that emerged from this were
personal health views/awareness of risk, family involvement in care practices, and experiences
with insurance providers that influenced quality of care. Conclusion: The results of this study
highlight the complexity of the YACCS cancer experience, as well as the interconnectedness of
influential layers across the cancer context. Recommendations for intervention strategies that aim
to support care engagement in this population include improving patient education of health
needs and bettering their confidence to seek care consistently and independently.
INTRODUCTION
Approximately 1 in 900 young adults (diagnosed under age 20 and currently under age
40) is a cancer survivor (Oeffinger et al., 2004). For the “average” person, these years of life are
known to be a difficult time of change, as one attempts to leave behind their childhood
dependence and enter the independence of the adult world. For an adolescent or young adult
survivor of cancer (YACCS), this multifaceted stage becomes increasingly more complex.
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YACCS face unparalleled challenges as they emerge into adulthood. As a result of cancer
treatment, they are at great risk for complications from their respective therapies such as
recurrence of cancer, cardiomyopathy, psychosocial complications, and early mortality
(Reppucci et al., 2017), commonly termed late effects. Therefore, consistent, survivor-focused
care is imperative to living a long and healthy life post-cancer. The current literature highlights
that YACCS exhibit low attendance rates to survivorship care, low adherence to guideline
recommended surveillance of risks, and have a 10-fold increased risk of death compared to the
general population (Yan et al., 2020). The reasons for low attendance and surveillance adherence
may include sociodemographic and psychosocial factors such as socioeconomic status (SES),
culture, perceived quality of care, comfort with physician, and patient-provider communication.
Surveillance for late effects is an important component of long-term health for YACCS.
To mitigate the risks they face from prior treatment, consistent follow-up should be used for
prevention and/or early detection of disease. The Children’s Oncology Group in North America
has established a set of long-term follow-up guidelines for survivors of childhood, adolescent,
and young adult cancer (Children’s Oncology Group, 2013). The guidelines were created to
encourage surveillance for common late effects such as recurrence of cancer, secondary
malignancies, and cardiomyopathy (Children’s Oncology Group, 2013). This is done by
outlining periodic testing such as echocardiograms, mammograms/breast MRI, etc. related to
treatment exposures. YACCS may be made aware of these important surveillance practices by
their physicians through follow-up care attendance or accessible online resources.
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The cancer care continuum is a framework for organizing the complex range of care
opportunities that a YACCS will experience throughout their cancer journey, including
surveillance, screening, treatment, follow-up, counseling, and survivorship care (Taplin et al.,
2012), all surrounded by layers of influential factors. As depicted in Figure 1 of the Cancer Care
Continuum, cancer care can be impacted contextually from the level of the individual patient all
the way to the health policy environment (Taplin et al., 2012) (Zapka et al., 2003). Each level of
influence is linked to the quality of cancer care individuals receive. In turn, improved quality of
cancer care will result in the improvement of cancer-related outcomes (Taplin et al., 2012). It is
likely that improvements in care quality and care experiences across the cancer journey would
support a YACCS in making the right health decisions for their needs (i.e., obtaining consistent
follow-up care as a survivor and adhering to necessary surveillance), leading to better overall
outcomes.
The illustrated relationship between influences of cancer, quality of care, and health
outcomes (shown in Figure 1) can also be modified more specifically for the YACCS survivor,
as these individuals face unique obstacles and risks across their remaining lifespan (Bellizzi et
al., 2012), for which consistent care engagement is imperative. Figure 2 describes the linear
relationship between CCS/YACCS survivors, care engagement, adherence to surveillance, and
prevention of early mortality/disease (improved health outcomes). As with Figure 1, each of the
levels of cancer influence play a role in improving or worsening care engagement for survivors,
and as a result, impacting their long-term health.
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The span of care-related interactions a YACCS will experience throughout their cancer
journey can be viewed as a collection of health care experiences and an important area of focus
for YACCS research (Pilnick et al., 2009). In the general non-cancer affected population,
patients who are more active in their care, show improved health outcomes (Hibbard & Greene,
2013). Care experiences play a role in the relationships one has with their healthcare providers,
their confidence to pursue the care they need (health care self-efficacy), their future willingness
to continue engaging in care, and their overall health outcomes (Clancy 2011). In contrast,
negative care experiences can lead to patient disengagement and associated health consequences.
As an example, research on breast cancer patients in California found that those who
experienced perceived medical discrimination may exhibit active coping mechanisms that deter
them from utilizing healthcare to avoid discrimination (Quach et al., 2012). Although these
findings can be broadly translated to other cancer patients and survivors, the responsibility
YACCS bear in managing their health is complex due to their risks for late effects post-cancer
treatment and their age and life stage.
Researcher-developed tools, such as the Consumer Assessment of Healthcare Providers
and Systems (CAHPS) measures, have been established to assess patient experiences of care.
These are used among cancer patients and survivors to understand patient satisfaction, care
behaviors, and outcomes (Mollica et al., 2017). A study using SEER registry data examined
differences in patient experiences between racial/ethnic groups in relation to earlier stage of
breast cancer diagnosis (Farias et al., 2020). This study found that Black patients had
significantly lower mean scores in their CAHPS measures compared to White patients (after
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adjusting for potential confounders), highlighting poorer reported patient experiences (e.g., lower
ratings of their health care, getting care quickly, and getting care needed) among racial/ethnic
minorities after cancer diagnosis (Farias et al., 2020). Additionally, those who reported a 1-unit
increase in their ratings of customer service in care and ability to get care quickly, had higher
odds of earlier stage breast cancer diagnosis (Farias et al., 2020). Patient satisfaction may thus
act as a proxy for measuring future care engagement (i.e., patients who are more satisfied with
care may be more motivated and encouraged to continue seeking care and will monitor health
more consistently).
Researchers commonly assess care experiences in reference to the direct interactions that
individuals have with one’s practitioner/care team/clinic (Kirchoff et al., 2014) (Nandakumar et
al., 2018). However, it is possible to consider the definition more broadly. YACCS throughout
their cancer journey and into survivorship are likely counselled (alongside their caregivers) on
many different elements of their health/care, including mental health, substance use, nutrition,
and physical activity (Raber et al., 2016) (Nathan et al., 2009)– to ensure they life a long and
healthy life moving forward. Therefore, utilizing a broader definition of care experiences that
encompass individual care practices like personal lifestyle choices (physical activity and
nutrition), interactions with broader organizations such as insurance corporations, and family
involvement/support with care, would likely be more appropriate for this population. Each of
these care experience examples have the potential to impact their overall health outcomes and
should be considered.
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Understanding care experiences that facilitate long-term engagement and health care
practices is important for young adults who face complex vulnerabilities as cancer survivors.
Patient satisfaction, family involvement in care, and relationship with physicians may all play a
role in shaping a survivor’s perspective of their care experience and evaluation of care quality,
further influencing one’s trajectory of future care visits. Using the cancer care continuum as a
framework for organizing the varying levels of influence to health care engagement and future
outcomes, this study will analyze YACCS qualitative interviews to gain insight on survivor
perspectives of care experiences broadly defined, and their relationships to cancer-related followup care attendance.
METHODS
Participants
Data for this study was collected from The Project Forward Cohort Study, which includes
childhood cancer survivors from the Los Angeles County Cancer Surveillance Program
(CSP/SEER) (Milam et al., 2021). To conduct qualitative interviews, a purposive sample of
young adult survivors were recruited from the study to obtain a representative sample of
survivors across the domains of follow-up care status (yes/no), ethnicity (Hispanic/NonHispanic), and reported sex (male/female) (Table 1). Informed consent was obtained for all
participants prior to participation. The Institutional Review Board of the University of Southern
California approved the study procedures (HS-14-00817).
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Data Collection Interviews
There were 34 semi-structured telephone interviews conducted by four researchers. The
interviews were conducted following an interview guide (attached in Appendix 1), however,
flexibility in the phrasing and order of questions was allowed. Informed consent was obtained at
the start of each interview to approve participation and recording. Each interview lasted between
30-80 minutes.
Interview Guide
Interview questions directly related to the topics of interest for each study are outlined
below (The interview guide in See Appendix 1 for the full interview guide). Due to the semistructured nature of the interviews and the ability for interviewers to adapt their questions based
on the interview, data for each study may have been gathered outside of the answers to these
specific questions (i.e., in other sections of the interview).
Relevant Questions
DOCTOR ACCESS / FOLLOW-UP CARE
1. About how often do you go to the doctor? What kinds of doctors? Do you see any special
doctors to follow-up with after your diagnosis? Oncologist? Any special clinics?
2. Do you know about survivorship clinics?
3. If yes, which one(s)? How did you learn about it? Have you ever visited one?
4. When was the last time that you went to the doctor? Tell me about that last visit – walk
me through what happened. How did you go about scheduling the appointment? Did you
schedule the appointment or did someone help you (i.e. family, friend)? Why did you go?
What did you discuss?
5. Does your doctor know about your cancer?
6. What kind of care has been recommended to you to keep you healthy after having
cancer?
7. Were there screenings or tests that you are supposed to do? At certain times?
8. Have you been able to do the follow-up care that was recommended?
9. Have you faced any challenges to getting the care that you need?For example, do you
have problems making appointments with your doctor? Do you have any issues getting
referrals to see other doctors or specialists?
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10. Are there logistical barriers to getting the care you need? (Transportation, distance to the
clinic, childcare, finances, appointments interfering with your work, etc.?)
11. What makes it easier to get the care you need?
12. Are the logistics easy for you? (Transportation, childcare, cost, distance to the clinic, etc.)
13. Do you feel comfortable talking to your doctors? Do they understand you?
14. Do you feel motivated to keep getting the care you need? What motivates you?
15. Do you have help from other people in your life?
16. Do you have health insurance? If yes, what type? And where do you get it from? Work?
Your parents? Covered California, through the Affordable Care Act, or “Obamacare”?
What do you think of your insurance in general? Does it pay for what you need?
TRANSITION
1. At what age did you change from seeing a pediatric doctor to adult doctor?
2. How was the process? Please explain (i.e. did you have any issues making this change?)
3. What was it like to change doctors for you?
Definition of Important Concepts
Care Experience – Defined as one’s personal experience in caring for their health/wellbeing (including interactions with the health care system, such as attending physician visits,
managing insurance, lifestyle choices, receiving help from friends and family, etc.).
Care Engagement – Defined as any interaction with the health care system related to a
prior cancer diagnosis that focused on follow-up screening and monitoring of this diagnosis.
Qualitative Data Analysis
Interviews were recorded using a digital device and then transcribed. Of the data
collected, 8 interviews lost due to equipment failure, and 1 completed in Spanish. Therefore, 26
English-language recorded interviews remained for analysis.
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The analytic process for this study involved initial memoing, coding, focused coding, and
advanced coding – this approach was based on the principles of the constructivist grounded
theory (Charmaz, 2006), an extended methodological genre of the original grounded theory
developed by Gauss and Strauss (Glaser, 1978). Charmaz’s constructivist grounded theory
approach focuses on how participants construct meaning in relation to the area of inquiry
(Charmaz, 2006) – in this case, care experiences. With this strategy, the researcher co-constructs
experience and meaning with the study participant during the data collection process(Charmaz &
Bryant, 2011). This analytic approach also helps to create/modify? Theories by building
inductive analysis from the data (Charmaz, 2006).
Coding - Firstly, a small subset of transcripts was read by both analysts independently to
create an initial list of a priori codes– these preliminary codes were also based on the interview
questions and exploratory goals of study 1 and 2. Following this, intermediate coding (a.k.a.
focused coding) began, which primarily involved memoing. Each analyst read the transcripts line
by line and memoed each; specifically, this entailed recording details on the analysts’ thoughts,
feelings and intuitions that came from reading the transcript. The memos recorded were also
used to inductively generate a full list of codes and describe the process of code creation,
collapsing, separation, and category development (Birks & Mills, 2015). Following this, both
analysts then met to discuss and finalize the codebook. The coding was then entered digitally
into Atlas.TI 23 (a qualitative data analysis software), from which a thematic analysis was
conducted for theoretical categories to emerge. During the final stage of advanced coding, the
storyline technique (Birks & Mills, 2015) was used to conceptualize the core theme and create a
story that connects the categories in a way that supports the theoretical proposition (Strauss &
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Corbin, 1998). The analytic tools referenced above were used to increase theoretical sensitivity –
defined as the ability to know when a data segment is important to the theory proposed (Glaser,
1978).
Inter-rater reliability was considered but not applied to the methodology of both study 1
and 2. Although a second analyst did read through the transcripts for coding, this was only done
to achieve a comprehensive list of codes as opposed to trying to achieve ‘the same’ codes
between analysts. The semi-structed interviews creates an opportunity of learning and fluidity by
the researcher as they progress through the interviews(Morse, 1997). When there is variability in
the way questions are asked, and modifications made to the interview guides along the way,
interviews may overlap and have slightly different content. Although respondents are providing
answers to the same question topics, the flow of the interview will influence the length and depth
of each answer (Morse et al., 2002). With this type of data collection, analysis of the responses
can be highly interpretive (Morse et al., 2002), as the analyst learns from each transcript and
evolves their coding book with each interview that is analyzed. It would be difficult to convey
the same level of understanding through a document of code definitions to another analyst
looking to achieve reliability. Therefore, we did not assign an additional analyst to the task of
achieving agreement (Deterding & Waters, 2021).
RESULTS
Descriptive Statistics
Of the data collected, 8 interviews were lost due to equipment failure, and 1 completed in
Spanish. Therefore, 26 English-language recorded interviews remained for analysis.
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The analytic sample consisted of 26 participants, of which over 50% were Hispanic.
Interviewees were an average age of 8.8 years at diagnosis, and 25.4 years at the time of data
collection. An overview of the samples descriptive characteristics and age breakdown is
provided in Table 1 and 2 below.
Table 1: Descriptive Characteristics of Project Forward Qualitative Analysis Sample
Table 1. Participant Characteristics (N=26)
Variable N %
Follow-up status
Yes 13 50.00%
No 13 50.00%
Demographic
Hispanic 15 57.70%
Non-Hispanic 11 42.30%
Sex
Female 12 46.20%
Male 14 53.80%
Diagnosis
ALL 9 34.60%
Lymphoma 4 15.40%
Brain 3 11.50%
Eye/Orbit 2 7.70%
Urinary System 2 7.70%
Thyroid† 2 7.70%
Other Endocrine 2 7.70%
Soft Tissue 1 3.80%
Digestive 1 3.80%
Melanoma 1 3.80%
† one participant was diagnosed with both ALL and Thyroid
cancer
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Table 2: Project Forward Participant Age Breakdown
Table 2. Participant Age (N-26)
Mean
(SD) Range
Age at
diagnosis 8.8 (7.4) 0-22
Age at survey 25.4 (3.3) 20-31
An Overview of The Cancer Care Continuum & Survivor Care Experience
The cancer care continuum is a framework that encompasses the cancer care journey and
survivorship experience. It is an adapted model for understanding care experiences through the
lens of many interconnected layers. With the goal of recognizing the ways in which follow-up
care interventions can be improved upon for YACCS, the framework summarizes a hierarchy of
intervention levels for healthcare engagement, as well as highlighting the embeddedness of the
individual patient in each of the levels.
During the process of analyzing the YACCS care experiences, each survivor experience
was unique and complex in numerous ways, with multiple layers of influence impacting their
care experiences across the cancer trajectory. Emerging data themes closely mirrored the layers
of influence described in the cancer care continuum and deeply emphasized the interconnectivity
of each in relation to impacting individual health practices and downstream outcomes (displayed
in Table 3 and Figure 3).
The major themes (bolded) are represented as the names of each layer from the cancer
care continuum, while subthemes are represented by the italicized headings. The details of each
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theme and subtheme in relation to the framework are described in detail below, highlighting key
quotations and commonalities amongst survivors through the 26 analyzed transcripts.
Influence from the Individual Patient
The individual patient is the most direct level of influence to downstream outcomes
shown on the cancer care continuum – including levels of impact such as biological factors, risk
status, comorbidities, and personal beliefs. Two subthemes prevailed throughout the transcripts
in relation to the individual patient: personal health practices and personal health
views/awareness of personal health risks. Personal health practices involved lifestyle choices
such as nutrition and exercise, while personal health views/awareness of personal health risks
related to one’s health beliefs and views of their health - past, present, and future.
Personal Health Practices to Support Well-Being
With regards to exercise as a means to support the way one feels on a regular basis and
positively contribute to one’s overall health, many survivors spoke of either currently having a
regular exercise practice or highlighting its importance and beginning to implement exercise in
their daily life.
“I exercise regularly at least 3 times a week and I take my vitamins and I take my medication. I
understand that that’s all important now.”
With regards to nutrition, commonalities that emerged were perceived control over good
versus poor nutrition, awareness of the benefits of healthy eating and its impact on overall
health/well-being. Specifically, many YACCS spoke of having good nutrition habits and an
intentional awareness of eating well to feel better. For example, one survivor spoke of a desire
for a guidebook to eating:
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“Having a guidebook to say well diet is really huge even if your condition isn’t really based in
diet - it doesn’t mean lose weight or eat x,y and z - it’s listening to what works in your body.
Your body responds to certain things, and you feel better with X amount of protein or more
fluids, so doing what’s better for you. It’s just never talked about with neurosurgeons with me”
By contrast, some YACCS made note of consistently poor eating habits such as eating
fast foods and fried foods regularly. For instance, one survivor described having poor current
nutrition following a prior strict regimen in the hospital:
“I basically eat all greasy food; I don’t keep up with diet anymore…when I used to go to the
children’s hospital they used to be strict and all…they were doing it so often…I just. Why do I
keep doing this…I want to eat!”
A survivor’s lack of attention to important lifestyle factors such as nutrition and physical
activity can potentially translate to other important health-related behaviours they exhibit, such
as long-term follow-up care attendance. Highlighting that care experiences can include lifestyle
related behaviors that impact the health of individual patients outside of a clinical setting.
Personal Health Views (Including Awareness of Personal Health Risks)
Key elements reported in this subtheme of personal health views were anxiety and worry
about previous cancer and future health, resilience, motivation and empowerment for personal
care, views of current health status and care practices, views of alternative care, avoidance
behaviors, and perceived control over one’s health. YACCS made mention of specific worries
related to cancer recurrence, worry of symptoms arising, and their future health status.
“I do have health concerns related to the chemo that I was taking when I was younger. As I’m
getting older, I am having concerns about is this going to affect my fertility. I’m always worried
about having heart issues in the future…in the back of my mind it’s something that I’m always
aware of”.
Additionally, some YACCS felt their current health status and care practices were poor,
while others made mention of positive health status and care practices. Survivors also spoke of
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taking part in alternative care practices and the importance of preventative care in their health.
Lastly, two survivors highlighted avoidance behaviors towards health practices due to their prior
cancer.
” Every time I go I feel like it’s going to be something bad…’oh you have this’ or something is
bound to show up…so that’s kind of my reason why I don’t visit a doctor as much as I should”
Influence from Family/Social Supports
The majority of YACCS in the sample (23 of 26), shared information on the support
received from family when it came to care practices both past and present. Specifically, survivors
mentioned that their family, commonly their mother or father, were directly involved with or
responsible for care appointment bookings and/or reminders about care.
“That would definitely be my mom. She’s really on me about all of that. She’s helped me from
the beginning…she’s always reminding me to get tests. She’s kept track of everything since I
had cancer.”
“My whole family is really supportive with it. My dad, I have my grandma as well and then my
brother and sister. They’ve all been there for me with all of this and they’re all still pretty good
about making sure that I’m staying on track, getting all the tests done and everything that I
need.”
Additionally, many of the survivors mentioned that family has been involved in
encouraging them to continue with health care practices such as follow-up appointments and
highlighted that family plays a role in reminding them to continue to seek follow-up care and
take care of their health.
“If it wasn’t for my mom I really wouldn’t be organized as far as healthcare. She’s been the
glue for everything that happens with my health - she’s the one who motivates me to make
doctor’s appointments if I need to or go see the doctor about X.”
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Influence from Provider/Team
Several subthemes prevailed in relation to the impact of providers and health teams. This
level of influence speaks to provider communication, knowledge, cultural competency, staffing,
teamwork, etc. Overall, survivors spoke to both negative and positive care experiences directly
related to a provider or health team interaction. Subtheme details are described below.
General Care Experiences with Providers/Health Teams
Survivors who spoke of positive care experiences with provider/health team interactions
expressed that they felt their provider was knowledgeable, comforting, reassuring, caring, and
attentive. For example, one survivor said:
“Her bedside manner was really good, and she was also very knowledgeable in terms of what
kind of cancer I had and dealing with cancer in general…she had years of experience, so I felt
like I was in good hands when I was with her.”
By contrast, several survivors reported what they described as ‘traumatic’ care
experiences, specifically during cancer care. This included painful memories of treatment, long
and exhaustive appointment days, and extensive hospital stays. Moreover, YACCS highlighted
feeling a lack of validation from their provider, leading to dissatisfaction with care. Lastly, lack
of provider knowledge related to cancer, inadequate communication of appointment fees, and
lack of appointment availability were amongst other experiences described by participants.
Changing of Provider (Including Transition of Care)
There were many survivors who spoke of needing to change physicians at some point in
their cancer care journey (including survivorship). Reasons for changing providers ranged from
moving geographical location, age of required transitioning from pediatric to adult care, and
switching of insurance providers. Survivors expressed frustration with regards to the process of
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being forced to change providers after developing close relationships with cancer-related
providers throughout the cancer journey.
“It definitely did suck a little bit more because I was on my own and the treatment that I got
before, they were always on top of what I had to do…it’s different cause you have to get your
own physicians and appointments now…I’ve been switching off to different doctors for the past
few years and it’s just stressful for one and then you have to explain yourself all over again each
time”.
Specifically, survivors spoke about the transition from pediatric care to adult care and
highlighted the difficulty of transferring paperwork between doctors. Survivors also shared
experiences of a common switch from specialist to general care practitioner after reaching a
certain age or time since survival of cancer.
“It’s been hard finding a doctor, our pediatrician like I said was there through it all, so she
knows the whole back history and she knows how my family is and how we do use alternative
medicine as well as generic medicine...so I think it’s hard to find another doctor that is willing to
listen or have the same belief as our family does”.
“Transferring over to an adult doctor was difficult because so much information was dropped
on me. Saying when you transfer, because you’re becoming an adult, because you had cancer,
you need to be aware that this could affect you genetically and looking forward into the future if
you want to have a family you need to be prepared”.
Frequency of Care
Those who reported follow-up care in the previous year spoke of getting care at least
once a year, with some receiving care monthly, quarterly, and bi-annually. Generally, survivors
said care appointments were either for surveillance of possible cancer recurrence, or due to lateeffects post cancer. Among those who did not report care in the previous year, some noted long
lengths of time since having a health care appointment (i.e., 5+ years), sometimes due to
avoiding care settings post-cancer. One survivor also mentioned that they choose to only seek
care when they felt it was a necessary emergency, and at that time, visiting an emergency room
(ER) was their choice of care.
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“Obviously when things are bad, I have to go see the doctor, but I generally tend to even avoid
going into checkups with my neurosurgeon unless it’s an emergency and we go in through the
ER”.
Relationship with Provider & Quality of Care
The majority of survivors made mention of their provider relationship. Survivors pointed
out several contributors to their relationship with their providers such as: feeling comfortable
with their providers due to the length of time knowing them, feeling open to ask questions,
feeling like the provider is attentive and caring to their circumstance, positive bedside manner,
having the same cultural background, and similar health beliefs. For example:
”The doctor I was going to in the clinic, I could feel he genuinely wanted me to be alright. And
he was Hispanic, so it was like we got each other, and I could talk to him more intimately”.
With regards to quality of care from the provider level, some survivors reported
perceived limitations in physician knowledge particularly related to primary care physicians, and
a lack of validation for expressed symptoms. One survivor’s perspective of this was:
“I think that they [PCP’s] sort of don’t really know what they’re doing… they’re guessing half
the time. Being a medical doctor must be super hard but especially when you’re working at an
*institution* and you’re dealing with so many patients I feel like the doctor patient repertoire
isn’t there… I feel like I’m just the next person in they hear, and they don’t really hear what
you’re saying.”
Influence from Organization/Practice Setting
Experiences with Insurance Providers
There were many survivors who made mention of impacts to care experiences from their
insurance providers. Specifically, survivors reported both positive and poor care experiences as a
results of insurance quality. The health care experience components mentioned in the interviews
that were related to the type of insurance were ease of appointment bookings, quality of
physicians, wait times, and coverage. For example, survivors described:
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“Before I had *an integrated care network*, so I didn’t mind going to the doctor…but now it’s
like with MediCal I dread it because it’s like the clinics aren’t that good and they’re always full,
the wait is always long”.
“[Insurance institution*] is such a huge place, it’s a little less personal, it’s kind more businesslike to go in there - they tell you do this do that and see you in a year. It’s not quite what it used
to be…definitely not that personal relationship I had with my old endocrinologist.”
“When my mom’s insurance did change, it was hard because I ended up having to find a doctor
and that one was a pain in the butt too because we didn’t know where to go…the list that they
gave us from *name of insurance company* wasn’t completely clear on where to go and what
doctors they will approve, so it was kind of a wild goose chase…to see what doctors we can
trust, especially for my care.”
Availability of Patient Education Resources
Many YACCS spoke about receiving or not receiving patient education resources from
their care clinics and other care settings. Most of these survivors described wishing for more
information than they had received throughout their cancer journey. For example, one survivor
spoke of the information they received during cancer care as:
“Very limited, very not explanatory, and not really given serious thought because it seemed a)
that there was no time, b) because the doctor was going to cure it and c) because people like
promises. People like to be told everything’s going be ok and that sounds good but it’s not
realistic then what if someone’s lived experience does not follow that fantasy model...”
Few YACCS made mention of receiving adequate information about the long-term risks
post cancer treatment, appropriate surveillance guidelines and necessary follow-up frequency.
Influence from Macro-Environmental Agents
The top three outer layers of the cancer care continuum model were combined into a
single category of macro-environmental agents, which include the local community environment,
state health policies, and national health policies. The main subtheme in this area was
environmental barriers to seeking care. This included transportation limitations in their
geographical area; strenuous experiences of moving clinic to clinic to get care from various
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specialists in different locations; and proximity to hospitals and cancer clinics typically located
in city centers.
Barriers to Seeking Care
” it’s a big place and I have to go for my thyroid, I have to go for my for diabetes and they’re all
separated - I’m telling you the whole trip over there, sometimes you’d be there for hours”.
Survivors described that the combination of such barriers typically resulted in very long
appointment days which would require time off work or school to attend. Lastly, some survivors
also reported difficulty in finding comparable post-cancer care in their respective college towns
that they had moved to, resulting in them waiting to return to their hometown for proper followup care.
Table 3: Emergent Themes, Subthemes and Exemplar Quotes from the Qualitative Transcript
Analysis of Care Experiences
Key Themes Subthemes Exemplar Quotes
Influence from the
Individual Patient
Personal health practices to
support well-being
“I basically eat all greasy food; I don’t
keep up with diet anymore…when I used
to go to the children’s hospital, they used
to be strict…they were doing it so
often…I just. Why do I keep doing this…I
want to eat”
Personal health views (including
awareness of personal health
risks)
”Every time I go I feel like it’s going to be
something bad like oh you have this or
something is bound to show up, so that’s
kind of my reason why I don’t visit a
doctor as much as I should”
Influence from
Family/Social
Supports
Family Support with Health
“That would definitely be my mom. She’s
really on me about all of that. She’s
helped me from the beginning…she’s
always reminding me to get tests and all
of that. She’s kept track of everything
since I had cancer.”
Influence from
Provider/Team
General Care Experiences with
Care Provider
“Her bedside manner was really good
and she was also very knowledgeable in
terms of what kind of cancer I had and
37
dealing with cancer in general…she had
years of experience so I felt like I was in
good hands when I was with her.”
Changing of Provider (Including
Transition of Care)
“it’s been hard because finding a doctor
like our pediatrician like I said was there
through it all, so she knows the whole
back history and she knows how my
family is and how we do use alternative
medicine as well as generic medicine.
So I think it’s hard to find another doctor
that is willing to listen or have the same
belief I’d say as our family does.”
Frequency of Care
“Obviously when things are bad, I have
to go see the doctor, but I generally tend
to even avoid going into checkups with
my neurosurgeon unless it’s an
emergency and we go in through the ER”
Relationship with Provider
”The doctor I was going to in the clinic, I
could feel he genuinely wanted me to be
alright, and he was Hispanic, so it was
like we got each other and I could talk to
him more intimately”
Quality of Care
“I think that they [GP’s] sort of don’t
really know what they’re doing… they’re
guessing half the time. Being a medical
doctor must be super hard but especially
when you’re working at an *institution*
and you’re dealing with so many patients
I feel like the doctor patient repertoire
isn’t there… I feel like I’m just the next
person in they hear, and they don’t really
hear what you’re saying.”
Influence from
Organization/Practice
Setting
Experiences with Insurance
Providers
“Before I had *an integrated care
network*, so I didn’t mind going to the
doctor…but now with MediCal I dread it
because the clinics aren’t that good and
they’re always full, the wait is always
long”.
Availability of Patient Education
Resources
“[Referring to patient education in
clinic] Very limited, very not
explanatory, and not really given serious
thought because it seemed a) that there
was no time, b) because the doctor was
going to cure it and c) because people
like promises. People like to be told
everything’s going be ok and that sounds
38
good but it’s not realistic then what if
someone’s lived experience does not
follow that fantasy model...”
Influence from
Macro-Environmental
Agents
Barriers to seeking care
”It’s a big place and I have to go for my
thyroid, I have to go for my for diabetes
and they’re all separated - I’m telling
you the whole trip over there, sometimes
you’d be there for hours”.
DISCUSSION
Overall Findings
The goal of this study was to gain insight on YACCS perspectives of their care
experiences broadly defined, understand more clearly the interconnectedness of influential layers
that occur across the cancer care continuum, and assess the potential ways in which care
experiences relate to current health-related behaviors such as long-term follow-up care
attendance.
Important subthemes that developed within the main framework layers of the cancer care
continuum model include awareness of perceived health risks, support from family systems on
regular care practices, memorable practitioner interactions that played a role in future willingness
to seek care, and experiences with insurance organizations that impacted quality of care received.
A visual representation of the way the themes and subthemes layer onto the original cancer care
continuum framework from Figure 1 is shown in Figure 3.
The Individual
The care experience of the individual patient may be viewed as the layer through which
all other components of cancer care influence work through. It is through the individual patient
39
that the impact translates to one’s perceived quality of care, willingness to engage in future care,
and their health-related outcomes. Results showed that YACCS perceived needs, evaluation of
their own personal health risks, view of current health status and confidence in receiving future
care were impactful to their health-related practices. Survivors who described fear of new
ailments arising and/or what they felt was a ‘traumatic’ care experience during cancer admitted
to avoiding health care settings. Although these care experiences can be viewed through the
cancer care layer of providers and health teams, the impact also transcends to the attitudes
survivors have towards attending care. In turn, this translates to a lack of appropriate follow-up
care among vulnerable individuals. Participants of a qualitative study of childhood cancer
survivors also expressed that the fear of cancer recurrence may play a role in avoiding
information and disengaging in survivorship care (Lee et al., 2022).
Contrastingly, YACCS who showed more awareness of risk and confidence in receiving
care were seemingly more likely to engage in the necessary follow-up care practices that are
important to their long-term health. Our results highlight the interconnectedness of influential
cancer care layers, as their experiences with providers, organizations and care settings influenced
the knowledge, attitudes, and beliefs of the individual, further impacting their care engagement
and health outcomes. It would be valuable to provide accessible education on the risks and needs
individual YACCS require throughout survivorship (i.e., through their care clinic or online
education programs) to support them in receiving proper long-term care. Additionally, creating
outlets where survivors can share their individual experiences and related emotions, or providing
mental health resources may be helpful in re-instilling confidence to getting the care that is
important to their long-term health.
40
Family/Social Supports
A recurring element throughout the interviews was the mention of support from family
members, not only during active treatment, but into post-therapy survivorship and follow-up care
as well. Most commonly, survivors mentioned that a parent was overseeing care practices such
as booking follow-up appointments, keeping them on track with medication, and generally
keeping them healthy through health-promoting behaviors (e.g., nutrition and exercise). A study
of adult survivors of childhood cancer showed that parental involvement in health care decision
making is significantly associated with attendance to follow-up care (Szalda et al., 2017).
Additionally, parents of YACCS from the Swiss Childhood Cancer Survivor Study commonly
reported involvement in follow-up care (Vetsch et al., 2016), highlighting the importance of
including both survivors and their parents on educational matters of follow-up care. Our
findings, in addition to what has been shown in the literature, show that parents commonly play a
key role in the health behaviours of YACCS, including their follow-up care attendance. Using a
broadened definition of care experiences to include the influence of family members in care,
adds a new opportunity for understanding their follow-up care patterns.
As YACCS emerge into adulthood after a childhood of navigating cancer, commonly
alongside their family members, their health-related practices as survivors can evidently be
influenced by their family (who likely played an impactful role in their health practices to date).
Childhood cancer survivors transitioning to adult care highlight the difficulty of becoming
independent in their health care practices (Frederick et al., 2017). Moreover, a study utilizing
data on one-hundred sixty CCS from the Project Forward Study showed that there were key
associations between parent and child social support and psychosocial well-being – implying an
41
opportunity to enhance survivorship care by addressing the social support needs of both
survivors and parents (Ochoa et al., 2023).
When designing intervention strategies for this unique population, it would be important
to consider that their care behaviours may be guided by parental influences even into adulthood.
Additionally, as YACCS gain autonomy from their families, it is possible that family support
may dissipate, creating risk for decreased care engagement. Survivor interventions must consider
the continued role of family influence as well as the decrease in such support and help prepare
these individuals to independently maintain their health long term. Broadly speaking, strategies
to improve health-care self-efficacy among YACCS are needed. Specifically, interventions that
are aimed at improving follow-up care engagement among YACCS should place emphasis on
supporting these individuals in developing the knowledge and confidence to seek appropriate
survivorship care (including knowledge of surveillance guidelines). Upon transitioning into
survivorship, practice settings (i.e., oncology clinics, survivorship clinics) should make it a
priority to educate YACCS alongside their families on life after cancer.
Provider/Teams
With regards to providers and health care teams, survivors shared their care experiences
with providers across the cancer journey - from receiving treatment after diagnosis, to follow-up
appointments that monitor survivor late effects. The YACCS in our sample described many
positive and negative care experiences with their providers and teams, including elements of
communication, coordination between practitioners, and transitions of care. Many shared the
challenges of changing providers throughout their journey (commonly from pediatric to adult
clinicians), highlighting the difficulty of establishing a relationship with new providers who may
42
not be aware of their cancer history. Some survivors even expressed a lack of confidence in their
practitioner’s knowledge after transitioning out of oncology care to a primary care physician.
Each of the described experiences with practitioners related to a level of satisfaction that one had
with their quality of care, which can have a downstream effect on the health outcomes of
individuals as shown in the cancer care continuum. Moreover, a poor level of satisfaction with
care on the provider level can translate to a reduced willingness to continue engaging in
necessary survivorship care. Strategies for improving care attendance should continue to account
for the effects of transition of care among YACCS and aim to streamline the changeover
between practitioners during the critical years of follow-up care.
Organizations
While the layer of organizations encompasses many things, our analysis highlighted the
influence of insurance quality. Typically, in studies of cancer survivorship, care attendance and
health outcomes are evaluated based on the presence of insurance coverage (Mueller et al.,
2018). However, to our knowledge, few have examined the quality of insurance providers in
relation to care experiences among YACCS. It was clear through the survivor stories in our
sample that the type of insurance had a relationship to their perceived quality of care, satisfaction
one had with their care experience, and their willingness to seek survivorship care in the future.
A study from the Childhood Cancer Survivor Study demonstrated that publicly insured survivors
were more likely to report a cancer-related visit or cancer center visit than survivors who were
privately insured (Casillas et al., 2011). Thus, some types of insurance may not cover specialized
survivor clinic visits, and patients may need to seek care from a PCP/oncologist in-network who
is unaware of their past history and may also be unaware of surveillance guidelines.
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Insurance stability may also play role in YACCS’ willingness to seek future care.
YACCS from our study explained the process of transitioning insurance providers once they are
no longer eligible for parental insurance coverage – leading to shifts in their coverage of
services, ease of making appointments with specialists, and the quality of physicians they have
access to. Insurance coverage changes have also previously been associated with lower cancerrelated follow-up care use among YACCS (Mobley et al., 2021). Parents of YACCS have
expressed concerns about their child’s ability to properly select health insurance plans that will
support their needs – a task that can be overwhelming for someone with a history of cancer and
other possible chronic conditions (Sadak et al., 2021).
This information further underscores the need to support YACCS with appropriate
education of their individual late effects, the necessary surveillance guidelines, and the
appropriate follow-up care practices to expect/aim for in the future. With the knowledge of these
important components to their long-term health, survivors will be able to make more informed
decisions about the insurance coverage they need.
STRENGTHS & LIMITATIONS
The data used for the analysis of this study carries many strengths. The Project Forward
data captured a diverse, population-based sample of CCS in terms of cancer diagnosis,
sociodemographic background, and engagement in cancer-related follow-up care (Milam et al.,
2021). Specifically, the data included almost 50% Hispanic participants, which is not common in
the young adult cancer survivor literature (Table 1).
44
The limitations to note for this study are the breadth of the interviews and potential
selection bias. Although this is a secondary analysis of previously collected data, there are areas
of possible selection bias and response bias within the sample. For example, YACCS who had a
positive cancer experience would be more likely/willing to participate in a research study of this
type where they are asked to share information on their experience. In contrast, individuals who
had a negative experience may want to “forget” or “escape” that part of their past and be
unwilling to participate in a research study. A common theme that presented among CCS in a
previous study is the idea of “trying to forget cancer” (Carpentier et al., 2008), which may
contribute to one’s likelihood to participate in research studies that discuss cancer experiences.
Due to the nature of the Project Forward Study, it was not possible to assess non-registry
variables such as “care experience” associated with the likelihood of study participation because
this information would not be accessible for survey non-responders (Bellizzi et al., 2012).
If a majority of the sample is participating due to the bias of having a more positive
cancer experience, this would skew the results available for analysis. However, participants
were randomly selected for inclusion based on the prospective factors of race/ethnicity, sex, and
follow-up, from a population-based sample, thus reducing the likelihood of this bias compared
to, for example, clinic/convenience-based samples. Half of the participants had not received
cancer-related follow-up care in the prior two years.
CONCLUSION & FUTURE IMPLICATIONS
Our findings add to the foundation of knowledge about the way survivors view their care
experiences, as well as the interconnectedness of the many layers of influence that account for
45
one’s experience and future health behaviors. Importantly, the results highlight the complexity of
the cancer experience, which continues well into long-term survivorship. To our knowledge, the
literature on YACCS to date has independently assessed many of the contributing factors to
appropriate survivor health care practices, however, few have explored the interconnectedness of
the layers of influence across the cancer experience. The use of semi-structured interview data
helped to reveal important information on all elements of one’s past care experiences and its
potential impact on future health behaviors/care engagement, specifically follow-up care
attendance. Our analysis of survivor voices helps to shed light on the necessity to view survivor
care experiences in a way that shows the full landscape of influential components. Based on the
results from this study, recommendations that span multiple influential layers would include
patient education upon transition to survivorship and improvements of health-care self-efficacy
among YACCS. Further research in this area would help healthcare professionals develop future
interventions that span multiple levels of influence to mitigate the complex challenges this
population faces.
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CHAPTER 2: The Impact of Health-Related Beliefs on the Cancer and Survivor
Experience of Ethnically Diverse Young Adult Childhood Cancer Survivors: A Qualitative
Analysis
Kagramanov D, Golub M, Miller KA, Freyer DR., Cockburn, MG., Farias, A., Ritt-Olson A, &
Milam JE.
ABSTRACT
Introduction: As a result of life-saving therapies, YACCS are at risk for complex
vulnerabilities that require consistent follow-up care and surveillance. Their health related beliefs
in relation to their cancer and survivorship may have an impact on their health behaviors,
attendance to follow-up care and overall health outcomes. Objective: Using the cancer care
continuum as a framework for organizing the levels of influence to health care engagement and
future outcomes, this study will use qualitative interviews to gain insight on survivor health
beliefs and their relationship to follow-up care attendance. Methodology: Patients were selected
from The Project Forward Study, a cohort of young adult survivors of childhood cancer from the
Los Angeles County Cancer Surveillance Program (CSP/SEER). A purposive sample (N=26)
was recruited and interviewed via a semi-structured questionnaire to obtain a representative
group across the domains of follow-up care status (yes/no), ethnicity (Hispanic/Latinx/NonHispanic/Latinx) and reported sex (male/female). The age range at interview was 20-31 years,
and 53.8% were male. A qualitative analysis based on constructivist grounded theory was
conducted. Atlas.TI 23 software was utilized for analysis. Results: Three major themes prevailed
which paralleled the levels of the cancer care continuum: the individual, family/social networks,
and the local community environment. Notable subthemes that emerged from this were personal
cultural identification, family influence of health beliefs, and the effects of geographical location
on health practices. Conclusion: The results of this study highlight the many layers of the cancer
experience for YACCS, as well as the interconnectedness of influential components related to
the cancer context. Recommendations for intervention strategies that aim to support care
engagement in this population include programs to support cultural matches in physician care
and patient education on health importance upon the transition to survivorship as a means to
encourage care attendance.
INTRODUCTION
One’s view of health, their health practices, and care engagement patterns can stem from
several different sources including personally formed beliefs from past experiences, influence
from one’s family/social support systems, local community environments, cultural beliefs,
religious practices, and spiritual rituals (Bujawati et al., 2021). Each of these potential influences
47
can play a contributing role to the way in which one approaches their health and how they
prioritize their healthcare engagement.
Engagement in healthcare is particularly important for young adult survivors of
childhood cancer (YACCS) who face complex challenges as a result of prior life-saving therapy.
For this population, long-term impacts of cancer, commonly termed late effects, can include
recurrence of disease, new malignancies, cardiomyopathy, psychosocial complications, and early
mortality (Hudson et al., 2003), (Nathan et al., 2009). To mitigate the risks they face from prior
treatment, consistent follow-up should be used for prevention and/or early detection of disease.
In 2003, the Children’s Oncology Group in North America published a set of long-term followup guidelines for survivors of childhood, adolescent, and young adult cancer (Children’s
Oncology Group, 2013). The guidelines were created to encourage surveillance for common late
effects such as cardiac dysfunction, secondary malignancies, and psychological impacts.
Guidelines outline the necessary periodic testing i.e. echocardiograms, mammograms/breast
MRI, psychosocial screening, among other tests.
However, adherence to guideline recommended surveillance for late-effects and
attendance to consistent follow-up care is suboptimal in this population (Nathan et al., 2010). For
example, a cross-sectional study of childhood cancer survivor healthcare use (including those
within the young adult age group) in the preceding two years of reaching 5-years cancer free
reports that only 31.5% received survivor-focused care, and only 17.8% received care that
included advice on risk reduction (Nathan et al., 2008). The likelihood of receiving survivor-
48
focused care also decreases for vulnerable populations such as Hispanics and African Americans
(Casillas et al., 2015).
Over 60% of YACCS have reported having at least one chronic health condition
(Oeffinger et al., 2004). Compounded with the described risk for late effects from cancer
treatment, YACCS face distinct difficulties navigating psychosocial aspects of survivorship
during these stages of life (Oeffinger et al., 2004). Research has highlighted that a young adult’s
prior cancer has shown negative impacts on finances, body image, career plans, relationships,
family planning and general control over life (Bellizzi et al., 2012). The literature also suggests
that young cancer survivors are more likely to have poor nutrition, lack physical activity, and be
addicted to pain relievers, compared to their healthy peers or sibling (Carpentier et al., 2008).
Experiencing such obstacles has a critical impact on their quality of life and health outcomes.
A clear understanding of the influential components that drive follow-up care patterns is
very important for this population. More specifically, access to more information on the factors
that contribute to the development of one’s health-related beliefs and the ways in which such
varying factors uniquely influence YACCS, can shed further light on the facilitators and barriers
to care engagement in this population.
The cancer care continuum (shown in Figure 1) is an organizational framework that
outlines the varying levels of experience and influence one may face throughout their cancer
journey, from diagnosis to survivorship. As depicted in Figure 1, cancer care can be impacted
contextually from the level of the individual patient all the way to the nation’s health policy
49
environment (Taplin et al., 2012) (Zapka et al., 2003). Each level of influence is linked to the
quality of cancer care individuals receive. In turn, improved quality of cancer care will result in
the improvement of cancer-related outcomes(Taplin et al., 2012). This framework can also
highlight areas where health-related beliefs are formed, developed, and influenced throughout
the cancer experience. For example, spiritual beliefs on the individual level, cultural influence
from family members, and community norms from the local environment can all play a role in
the formation of a YACCS’ health beliefs. Downstream, it is likely that their health beliefs will
play a role in obtaining consistent follow-up care as a survivor, leading to better overall
outcomes.
Cultural influence is a common factor explored in relation to survivor follow-up care
attendance (Khan et al., 2016). Each culture has their own set of values and beliefs that explain
reasons for illness, ways in which to seek treatment, and who is to be trusted in the healing
process. The extent to which an individual embodies their cultures’ health-related beliefs can
have significant impact on their health behaviors and willingness to attend care. Cultural values
and belief systems can also have a strong influence on patient compliance – which is extremely
important among YACCS at risk of future health complications(Info, 2014).
The United States is highly ethnically and racially diverse and cultural subgroups have
varying values and beliefs that apply to health practices. For example, Asian cultures strongly
value authority, and therefore recommendations made by health care providers are often adhered
to (Info, 2014) (Swihart et al., 2018). Asian patients are often reluctant to discuss or accept
mental illness, as it is believed to show a lack of self-control and is a negative reflection on the
family (Info, 2014) (Chen et al., 2008). Many Hispanic patients view illness as “God’s will or
50
divine punishment” based on sinful behavior (Info, 2014). Hispanics also commonly consult with
alternative healers and are accepting of using alternative medicines for treatment (Info, 2014)
(Taylor, 2001) – possibly playing a part in attendance to traditional allopathic care. Among
African Americans, the church is seen a valuable support system for addressing life’s challenges
(Info, 2014). In these ways, diverse ethnic groups share their own perspectives on healthcare and
the best way to approach illness. As such, culture can ultimately shape attitudes, beliefs and
health seeking behaviors among cancer patients. Therefore, delivering health care in a way that is
respectful and complimentary to a patient’s beliefs (cultural competence) is important to
maintain desired health outcomes(Swihart et al, 2018).
Hispanics- Nearly 1 in 5 people in the United States identify as Hispanic, making it the
largest minority group in the country (U.S. Census Bureau, 2020). Cancer continues to be the
leading cause of death among Hispanics who are disproportionately affected by structural and
social factors including low-wage occupation, discrimination, and lack of access to health
services(Velasco-Mondragon et al., 2016). This makes them an important minority group to
understand in the context of cultural beliefs and healthcare.
Common beliefs in Hispanic culture include a strong emphasis on family (familism),
perception of weakness among the sick, and strong faith and spirituality (Gordon, 1994). More
specifically, support from extended family is very important among Hispanics, and important life
events such as cancer illness are only to be discussed within the family unit (Gordon, 1994).
Generally, psychological concerns are not well received and there is resistance to psychologist
counseling (Gordon, 1994) – something that may benefit YACCS with psychosocial
51
complications post-cancer (Van Erp et al., 2021). Additionally, men are not to complain or
express intimate feelings unless among close friends(Gordon, 1994). Many Hispanics utilize
prayer or healers before seeking professional medical assistance (Gordon, 1994) (Taylor, 2001),
possibly delaying receipt of necessary care among survivors facing symptoms of late effects.
When engaging with physicians, many Hispanics prefer an authoritarian-paternalistic
relationship in which the doctor tells the patient what to do without question from the patient
(Fowler et al., 2022). The nuances of culture thus have a direct relationship to the health
practices and outcomes of this population (Gallo et al., 2009). There is great value in
understanding these cultural beliefs into the context of the survivor experience to improve the
disproportionate outcomes they commonly face.
The role of culture, as well as religion and spirituality is prominent throughout the cancer
experience, impacting response to diagnosis, compliance with treatment, living and coping with
cancer, death, etc. For example, YACCS who identify with Hispanic culture and hold any of the
common health related beliefs described above, may benefit from strong family support
throughout cancer treatment. Alternatively, some may feel discomfort expressing psychological
concerns post-cancer and feel hesitant seeking care for such symptoms. Implications of culturally
relevant health beliefs on follow-up care may vary depending on the beliefs one holds –
emphasizing the importance of hearing survivor voices and listening for the elements that
influence perspectives on care.
On the level of the individual, health-related beliefs (outside of those influenced by
cultural, religious, and spiritual practices) also play an important role in the cancer and
52
survivorship experience. A review study of childhood cancer survivors (CCS) showed that their
health beliefs are often associated with perceptions of physical limitations, overall late effects,
and cancer-related pain (Bitsko et al., 2015). Additionally, research that evaluated health belief
concepts directly from the Health Belief Model (including perceived susceptibility and severity
of future late effects, potential benefits and barriers to follow-up, general health value and cues
to action) found significant associations with follow-up care – highlighting the negative impacts
of patient beliefs of health-related barriers on care attendance (Michel et al., 2011). Lastly,
evaluations of survivor health care self-efficacy (HCSE), defined as one’s perceived confidence
to manage their health care and an important health-related belief to consider, showed
associations with attendance at a survivorship clinic, having a regular source of care, and any
type of health insurance (Miller et al., 2016). Notably, this study also reported lower HCSE
among Hispanic survivors compared to non-Hispanics (Miller et al., 2016). Such evidence
emphasizes the need to consider all types of health-related beliefs (influenced by individual
experiences, family members, culture, religious communities, etc.) when evaluating care
attendance patterns of YACCS.
Overview
The influence of health care beliefs, culture, and care engagement among YACCS has
not been widely studied qualitatively to date. However, it is likely that the factors that shape
one’s health-related beliefs and impact their care practices generally will impact survivorship
outcomes. For example, survivors who identify with cultural beliefs such as fatalism or stigma
around cancer may be skewed towards engagement or disengagement in survivorship care.
Additionally, survivors who do not receive culturally competent care may also be dissuaded from
53
future health care interactions. Using the cancer care continuum as an organizational framework
of influential factors across the cancer journey, the following study will assess the possible
impacts of health-related beliefs among YACCS in California. Through qualitative interviews,
we will gain insight on the influence of factors such as culture, religion, and spirituality from
varying perspective (the individual, family, community, organization, etc.) among culturally
diverse YACCS.
METHODS
Data for this study was collected from The Project Forward Cohort Study, which includes
childhood cancer survivors from the Los Angeles County Cancer Surveillance Program
(CSP/SEER) (Milam et al., 2021). To conduct qualitative interviews, a purposive sample of
young adult survivors were recruited from the study to obtain a representative sample of
survivors across the domains of follow-up care status (yes/no), ethnicity (Hispanic/NonHispanic), and reported sex (male/female) (Table 1). Informed consent was obtained for all
participants prior to participation. The Institutional Review Board of the University of Southern
California approved the study procedures (HS-14-00817).
Data Collection Interviews
There were 34 semi-structured telephone interviews conducted by four researchers. The
interviews were conducted following an interview guide (attached in Appendix 1), however,
flexibility in the phrasing and order of questions was allowed. Informed consent was obtained at
the start of each interview to approve participation and recording. Each interview lasted between
30-80 minutes.
54
Interview Guide
Interview questions directly related to the topics of interest for each study are outlined
below (The interview guide in See Appendix 1 for the full interview guide). Due to the semistructured nature of the interviews and the ability for interviewers to adapt their questions based
on the interview, data for each study may have been gathered outside of the answers to these
specific questions (i.e., in other sections of the interview).
Directly Relevant Questions
CULTURE
1. Do you identify with a particular culture or ethnicity? If so, which one?
2. Do you think that your culture affects your health? In what ways?
3. Do you feel that people in your culture have any challenges that other groups don’t face when it
comes to health issues?
Definition of Important Measures
Health Related Beliefs – Defined as one’s perception of their personal health, one’s
perceived ability to perform health-related activities, and one’s perception of their control over
their health.
Cultural Health-Related Beliefs – Defined as the influence of cultural practices and
norms over the way one views their health and health problems.
Care Engagement - Defined as any interaction with the health care system related to a
prior cancer diagnosis (e.g., follow-up care to screen for late effects of treatment).
Qualitative Data Analysis
Interviews were recorded using a digital device and then transcribed. Of the data
collected, 8 interviews lost due to equipment failure, and 1 completed in Spanish. Therefore, 26
English-language recorded interviews remained for analysis.
55
The analytic process for this study involved initial memoing, coding, focused coding, and
advanced coding – this approach was based on the principles of the constructivist grounded
theory (Charmaz, 2006), an extended methodological genre of the original grounded theory
developed by Gauss and Strauss (Glaser, 1978). Charmaz’s constructivist grounded theory
approach focuses on how participants construct meaning in relation to the area of inquiry
(Charmaz, 2006) – in this case, care experiences. With this strategy, the researcher co-constructs
experience and meaning with the study participant during the data collection process(Charmaz &
Bryant, 2011). This analytic approach also helps to create/modify? Theories by building
inductive analysis from the data (Charmaz, 2006).
Coding - Firstly, a small subset of transcripts was read by both analysts independently to
create an initial list of a priori codes– these preliminary codes were also based on the interview
questions and exploratory goals of study 1 and 2. Following this, intermediate coding (a.k.a.
focused coding) began, which primarily involved memoing. Each analyst read the transcripts line
by line and memoed each; specifically, this entailed recording details on the analysts’ thoughts,
feelings and intuitions that came from reading the transcript. The memos recorded were also
used to inductively generate a full list of codes and describe the process of code creation,
collapsing, separation, and category development (Birks & Mills, 2015). Following this, both
analysts then met to discuss and finalize the codebook. The coding was then entered digitally
into Atlas.TI 23 (a qualitative data analysis software), from which a thematic analysis was
conducted for theoretical categories to emerge. During the final stage of advanced coding, the
storyline technique (Birks & Mills, 2015) was used to conceptualize the core theme and create a
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story that connects the categories in a way that supports the theoretical proposition (Strauss &
Corbin, 1998). The analytic tools referenced above were used to increase theoretical sensitivity –
defined as the ability to know when a data segment is important to the theory proposed (Glaser,
1978).
Inter-rater reliability was considered but not applied to the methodology of both study 1
and 2. Although a second analyst did read through the transcripts for coding, this was only done
to achieve a comprehensive list of codes as opposed to trying to achieve ‘the same’ codes
between analysts. The semi-structed interviews creates an opportunity of learning and fluidity by
the researcher as they progress through the interviews(Morse, 1997). When there is variability in
the way questions are asked, and modifications made to the interview guides along the way,
interviews may overlap and have slightly different content. Although respondents are providing
answers to the same question topics, the flow of the interview will influence the length and depth
of each answer (Morse et al., 2002). With this type of data collection, analysis of the responses
can be highly interpretive (Morse et al., 2002), as the analyst learns from each transcript and
evolves their coding book with each interview that is analyzed. It would be difficult to convey
the same level of understanding through a document of code definitions to another analyst
looking to achieve reliability. Therefore, we did not assign an additional analyst to the task of
achieving agreement (Deterding & Waters, 2021).
RESULTS
Descriptive Statistics
The analytic sample consisted of 26 participants, of which over 50% were Hispanic.
Interviewees were an average age of 8.8 years at diagnosis, and 25.4 years at the time of data
57
collection. An overview of the samples descriptive characteristics and age breakdown is
provided in Table 1 and 2 below.
Table 1: Descriptive Characteristics of Project Forward Qualitative Analysis Sample
Table 1. Participant Characteristics (N=26)
Variable N %
Follow-up status
Yes 13 50.00%
No 13 50.00%
Demographic
Hispanic 15 57.70%
Non-Hispanic 11 42.30%
Sex
Female 12 46.20%
Male 14 53.80%
Diagnosis
ALL 9 34.60%
Lymphoma 4 15.40%
Brain 3 11.50%
Eye/Orbit 2 7.70%
Urinary System 2 7.70%
Thyroid† 2 7.70%
Other Endocrine 2 7.70%
Soft Tissue 1 3.80%
Digestive 1 3.80%
Melanoma 1 3.80%
† one participant was diagnosed with both ALL and Thyroid
cancer
Table 2: Project Forward Participant Age Breakdown (Chang et al., 2021)
Table 2. Participant Age (N-26)
Mean
(SD) Range
Age at
diagnosis 8.8 (7.4) 0-22
Age at survey 25.4 (3.3) 20-31
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An Overview of The Cancer Care Continuum & Survivor Care Experience
The cancer care continuum is a framework that encompasses the cancer care journey and
survivorship experience. It is an adapted model for understanding care experiences through the
lens of many interconnected layers. With the goal of recognizing the ways in which follow-up
care interventions can be improved upon for YACCS, the framework summarizes a hierarchy of
intervention levels for healthcare engagement, as well as highlighting the embeddedness of the
individual patient in each of the levels.
Importantly, emerging data themes from this analysis closely mirrored many of the layers
of influence described in the cancer care continuum and deeply emphasized the interconnectivity
of each in relation to impacting individual health practices and downstream outcomes.
The major themes (bolded) are represented as the names of each layer from the cancer
care continuum, while subthemes are represented by the italicized headings. The details of each
theme and subtheme in relation to the framework are described in detail below, highlighting key
quotations and commonalities amongst survivors through the 26 analyzed transcripts.
Influence from the Individual Patient
The individual patient is the most directly affected level of influence that impacts care
engagement and health outcomes within the cancer care continuum. There were three major
subthemes that prevailed in relation to the individual YACCS: personal cultural identifications
and related health beliefs, religious and spiritual beliefs, and general health beliefs (not rooted in
59
cultural, religious, or spiritual practices). A more detailed description of each subtheme is
provided below with relevant example quotes from survivors.
Personal Cultural Identifications and Related Health Beliefs
Several survivors spoke of their individual cultural associations or in some cases, a lack
thereof. While some expressed a clear connection with a specific cultural background, often
rooted in their familial upbringing, a few also mentioned not having a specific cultural
connection and alternatively, relating to cultural practices within their social network. Some
examples of survivor cultural identifications included Hispanic, American, Persian, Hawaiian,
and Chinese. One survivor says:
“I identify myself with Mexican culture because that’s the tradition that’s how I grew up, I grew
up around my Mexican family”.
Hispanic YACCS spoke of cultural remedies and approaches to care that were unique to
Hispanics. For example:
” One of the main characteristics is a strong family. Because I know my family, whenever
something happens, everybody gets together, even if we’re fighting. Especially when someone is
that sick, everybody was looking out for me, and they still are.”
“Among Latinos we joke that our abuelas (our grandmas) say put vapor-rub on it if it hurts and
drink sprite or eat soup…and I still do that to this day. I was sick a couple weeks ago and I was
eating soup and grilled cheese nonstop. I was sick for days and I said I’m not going to go in [to
the doctor] because it’s probably nothing - so I think that is definitely a factor in how I still
approach medicine.”
Lastly, YACCS who identified with a specific culture also made mention of practitioner
preferences based on cultural background. Some examples of this are described below.
”I wanted either to meet a physician of color because I’m Latino, and preferably someone that
speaks Spanish just as a supplement.”
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“I think cultural match in terms of when it comes to health, especially mental health is
important because as much as someone from different backgrounds can understand each other
and empathize, I think for me, as it comes to health, you want as few barriers as possible.”
Religious and Spiritual Beliefs
With regards to religious and spiritual beliefs, majority of such mentions were related to
one’s belief in a higher power and/or their connection to faith/prayer. Often this was mentioned
with regards to the cancer experience and survivors would express that it was their belief in
higher power and/or prayer that supported them throughout their cancer journey. Some survivors
also mentioned continuing to connect to their faith and prayer throughout survivorship as a
means of support.
” I don’t go to church every week just cause I’m too busy, but I do pray and I do think I have a
good connection with my faith. It’s definitely helped me out through tough times in high school,
college, and with all aspects that includes survivorship.”
”I became a bit more spiritual, appreciative, thinking G*d’s giving me a second chance - not
everybody is able to get that. Religion helped me go through that.”
General Health Beliefs
For the general health beliefs of YACCS that were not related to culture, religion, or
spirituality, survivors spoke of their belief in the importance of prioritizing their health after
experiencing cancer, views and/or acceptance of alternative remedies during and post cancer, as
well beliefs with taking vitamins and supplements to support overall well-being as a survivor.
Some examples are provided below.
“I wouldn’t say I completely believe everything, but I’ve personally experienced some things
that I think at least has some merit. For example, there’s a belief that foods have given energy
which is called chi, and then certain types of food give more or less, and if you eat certain foods
that give too much that your body can’t handle then I start getting bloody noses and my throat
feels dry and sore. When my mom says oh watch out for this food, watch out for that food, you
know she’s generally right.”
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”For instance I have, I can’t remember how many prescriptions, but one was for anti-nausea
and then the side effect of that would be something else so I would have to take something to
counter that side effect and that would give me a side effect…And once I started um using
marijuana for medical use I didn’t have a need for all those pills anymore.”
”I think that healthcare is a really big priority for us because of the issues I have and the issues
my son has, so it’s just one of those things we choose not to have a big house and we choose to
live a modest life because these other things are a higher priority to us.”
Influence from Family/Social Supports
Family health beliefs & influence
In addition to the beliefs of the individual YACCS, many spoke of the beliefs of their
family members (including cultural, religious, and spiritual beliefs). They noted ways in which
the beliefs of their family and social support systems influenced their cancer journey and life
after cancer. For example:
“I’m pretty Anglo-Saxon white, that’s my heritage, and I think that specifically my family is
hyper independent and isolate into their own lives…there isn’t a huge network or community
like my Armenian friends where you have 15 people at the hospital with you whenever you get
sick. It’s very individually based and like ‘strive forward’ kind of way of dealing with illness. I
think it’s taught me to strive forward and fight for things, but I think it’s also run me into the
ground repeatedly by trying too hard and not accepting help”
”My mom has never gone to a doctor, she doesn’t do anything preventative. She is of age to get
mammograms and she always runs away from them and that’s kind of what I see and I don’t
ever want to do that.”
“As opposed to what my mom believes where she’s like here’s some teas and here’s some herbal
remedies…not that those don’t work because I do believe in those as well, but I feel there’s a
medium where both of those things can be on the same plane”.
*Speaking about care after cancer* “From what my parents told me they said they [the doctors]
are still recommending chemo and my mother went the holistic way. She said the chemo did
what it could do and you’re better now…it was a long experience for everybody. So apparently
beets have a lot of rich vitamins and things that keep you healthy so she did that pretty
ritually…it was just a lot of just cleansing and making sure that my body was properly
nourished”
Influence from the Local Community Environment
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Geographical Location of Home Community
A common element spoken about among survivors who mentioned their local community
was the health-related culture of their home. Specifically, survivors spoke about the elements of
their geographical location that support a “healthy” lifestyle, such as warm weather, outdoor
trails, parks, availability of nutritious foods and general health mindset of community members.
For instance survivors described the following:
“I think it helps living in California…we have the best sunshine, people are happy in California.
I can’t imagine living in Seattle and having a good head on my shoulders because I can’t
imagine not living in the sunshine. Also, we have a very holistic way of viewing life and I think
that’s really good. Moving to the Bay Area I feel like people are so much happier, so much
healthier and they don’t worry about the little things or the vain things and I think that’s
definitely good for my health/my outlook on my health. I can’t imagine living in the Midwest and
eating as healthy as I do or even being a vegetarian and having access to good food that I can
eat.”
”I think it could be contributing to my health because outdoor activities are really popular here,
hiking, swimming, biking, etc. That’s really all there is to do around here so people are pretty
active and I’m sure that has played a part in my health. It’s important to be active.”
Table 4: Emergent Themes, Subthemes and Exemplar Quotes from the Qualitative Transcript
Analysis of Health Beliefs
Key Themes Subthemes Exemplar Quotes
Influence from the
Individual Patient
Personal Cultural Identifications
and Related Health Beliefs
“Among Latinos we joke that our abuelas
(our grandmas) say put vapor-rub on it if
it hurts and drink sprite or eat soup…and
I still do that to this day. I was sick a
couple weeks ago and I was eating soup
and grilled cheese nonstop. I was sick for
days and I said I’m not going to go in [to
the doctor] because it’s probably nothing
- so I think that is definitely a factor in
how I still approach medicine.”
Religious & Spiritual Beliefs
” I don’t go to church every week just
cause I’m too busy, but I do pray and I
do think I have a good connection with
my faith. It’s definitely helped me out
through tough times in high school,
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college, and with all aspects that includes
survivorship.”
General Health Beliefs
”I think that healthcare is a really big
priority for us because of the issues I
have and the issues my son has, so it’s
just one of those things we choose not to
have a big house and we choose to live a
modest life because these other things are
a higher priority to us.”
Influence from
Family/Social
Supports
Family Health Beliefs and
Influence
”My mom has never gone to a doctor,
she doesn’t do anything preventative. She
is of age to get mammograms and she
always runs away from them and that’s
kind of what I see and I don’t ever want
to do that.”
Influence from Local
Community
Environment
Geographical Location of Home
Community
“I think it helps living in California…we
have the best sunshine, people are happy
in California. I can’t imagine living in
Seattle and having a good head on my
shoulders because I can’t imagine not
living in the sunshine. Also, we have a
very holistic way of viewing life and I
think that’s really good. Moving to the
Bay Area I feel like people are so much
happier, so much healthier and they
don’t worry about the little things or the
vain things and I think that’s definitely
good for my health/my outlook on my
health. I can’t imagine living in the
Midwest and eating as healthy as I do or
even being a vegetarian and having
access to good food that I can eat.”
DISCUSSION
Overall Findings
The overall objective of this exploratory study was to learn more about the health beliefs
of YACCS, understand the interconnectedness of influential layers that form health beliefs
across the cancer journey (including survivorship), and explore the ways in which these health
beliefs may play a role in their long-term follow-up care attendance. More specifically, there was
64
interest in examining health beliefs related to one’s culture, religion, and spiritual beliefs, as well
as any health-related beliefs that formed as a result of their cancer journey. Listening for possible
associations with current health behaviors created an opportunity for learning about new areas to
support YACCS in their long-term health journey.
Using the cancer care continuum model as a framework for understanding the influential
layers of impact to one’s care (Figure 1), there were key subthemes that developed within the
main framework layers of the cancer care continuum model. This includes: personal cultural
identifications and related health beliefs, religious and spiritual beliefs, general health beliefs,
family health beliefs and influence, and geographic location of home community. A visual
representation of the emergent themes and subthemes through the lens of the original cancer care
continuum framework from Figure 1 is shown in Figure 5.
The Individual
The results of our study highlight that on an individual level, one’s personal cultural
identifications and general health related beliefs were connected to the health behaviours of
YACCS. Specifically, survivors explained how cultural health-relevant norms such as belief in
natural remedies to care influenced their willingness and speed of seeking care upon
experiencing symptoms of illness. Additionally, among those that identified with the Hispanic
culture, some expressed clear preference to have a cultural match with their caring practitioner to
‘minimize barriers’ to care (such as language or cultural competency). Practitioners responsible
for providing care to YACCS should be aware of such preferences and advise survivors
accordingly during follow-up visits to ensure they’re receiving care for which they are confident
65
about (Ochoa et al., 2021). From the perspective of care organizations, it may be of consideration
to instill programs that are able to account for cultural preferences for YACCS follow-up care,
such as post-cancer surveys and clinician matching programs. Lastly, survivors who expressed
health as a priority due to past cancer experience and/or current late effects spoke of more
consistent follow-up care attendance compared to those who did not express their health as a
priority during the interview. This finding stresses the need to educate YACCS on the
importance of consistent follow-up care post cancer so that survivors may be more aware of its
necessity to long-term health (Corbett et al., 2018).
Family/Social Supports
With regards to the influence of one’s family and social support systems on health-beliefs
and health behaviors such as follow-up care, Our results found that survivors either felt they
were positively influenced by family members to care for themselves and were in agreeance with
the way family encouraged their health practices (i.e. through culturally related norms or general
health views), or they expressing disagreement with family health practices and aimed to
approach their health in opposing ways. In both cases, it was evident that the behaviors of their
family/social support teams throughout cancer were impactful to their care practices as survivors.
YACCS are at an impressionable age emerging into adulthood and seeking independence. It is
possible that young adults will either mirror their family’s health practices with which they were
raised or stray away from them, developing their own health beliefs and ways of caring for
themselves. Considering that the fragile time during which their health beliefs are evolving may
coincide with transition of care from active treatment to survivorship care, it would be
advantageous to collect information from YACCS and their families on their health beliefs
66
(Doshi et al., 2011) prior to entering survivorship so that providers/health teams can properly
advise and educate both parties.
Local Community Environment
At the level of the community, one’s geographic location played a role in their views of
health and for some, their health behaviours. Elements such as warm weather, availability of
nutritious food sources, and health-promoting practices that were common among communities
(such as biking, hiking, swimming, etc.) were all referenced as influential to the way one views
health and takes care of themselves on a daily basis. Although individuals did not specifically
describe the relationship this has to attendance of survivor follow-up care, it is possible that those
who take part in more health-protective behaviors as a result of influence from their community
(such as exercise and proper nutrition) may be more likely to attend follow-up care. To our
knowledge, studies have not explored this association among YACCS.
STRENGTHS AND LIMITATIONS:
The data used for the analysis of this study carries many strengths. The Project Forward
data captured a diverse group of participants in terms of cancer diagnosis, sociodemographic
background, and engagement in cancer-related follow-up care (Milam et al., 2021). Specifically,
the data included almost 50% Hispanic participants, which is not common in the young adult
cancer survivor literature (Table 1).
The limitations to note for this study are the breadth of the interviews and potential
selection bias. Although this is a secondary analysis of previously collected data, there are areas
of possible selection bias and response bias within the sample. For example, YACCS who had a
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positive cancer experience would be more likely/willing to participate in a research study of this
type where they are asked to share information on their experience. In contrast, individuals who
had a negative experience may want to “forget” or “escape” that part of their past and be
unwilling to participate in a research study. A common theme that presented among CCS in a
previous study is the idea of “trying to forget cancer” (Carpentier et al., 2008), which may
contribute to one’s likelihood to participate in research studies that discuss cancer experiences.
Due to the nature of the Project Forward Study, it was not possible to assess non-registry
variables such as “care experience” associated with the likelihood of study participation because
this information would not be accessible for survey non-responders (Bellizzi et al., 2012).
If a majority of the sample is participating due to the bias of having a more positive
cancer experience, this would skew the results available for analysis. However, participants
were randomly selected for inclusion based on the prospective factors of race/ethnicity, sex, and
follow-up, from a population-based sample, thus reducing the likelihood of this bias compared
to, for example, clinic/convenience-based samples. Additionally, half of the participants had not
received cancer-related follow-up care in the prior two years.
CONCLUSION AND FUTURE IMPLICATIONS:
The findings of this study add valuable knowledge to our understanding of health beliefs
of YACCS. More specifically, it sheds light on the various levels of influence that can impact a
survivors formed health beliefs and downstream, their future care behaviors such as follow-up
care. Our results showed that survivor health beliefs can be influenced through individual care
experiences, family, cultural upbringing, religious practices, and geographical communities.
Each factor played a role in shaping a YACCS’ view and approach to their current health. This
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information is important as it can be directly related to survivor care attendance - a necessity for
many of these individuals at risk for late-effects post cancer. These results imply that survivorfocused interventions to improve care attendance may benefit from greater knowledge of
survivor health beliefs, as this may shed light on less obvious barriers/facilitators to care
attendance. Moving forward, it would be recommended for researchers to continue assessing
survivor health beliefs in a way that can examine the full landscape of influential components
(individual, family, and community levels).
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CHAPTER 3: Impacts of Neighborhood Acculturation and Socioeconomic Status in
Relation to Long-Term Survival of Childhood Cancers Diagnosed in the State of California
Between 2006-2020
Kagramanov D, Thompson, LK., Miller KA, Freyer DR., Farias, A., & Milam JE., Cockburn,
MG
ABSTRACT
Introduction: Childhood cancer survivors are at risk for late effects such as chronic
disease, psychosocial complications, and early mortality because of life-saving therapies.
Sociodemographic factors are common mediators in the relationship between late effects of
treatment and early mortality and should be assessed carefully in the context of CCS who are
emerging into adulthood and possibly experiencing sociodemographic changes. Objective: The
following study aims to assess the long-term survival patterns among childhood cancer survivors
diagnosed in California between 2006-2020 and explore potential differences by race/ethnicity as
well as neighborhood SES and acculturation. Methods: Using California Cancer Registry data
alongside US census information on ethnic enclaves and nSES, 32,464 CCS diagnosed in
California between 2006 and 2020 were examined. Principal components analysis was used to
create a composite measure of acculturation. Cox proportional hazard models were used to
estimate the association between changes in neighborhood acculturation, nSES and long-term
survival. Results: Findings highlight that remaining in a highly acculturated neighborhood was
most protective to overall survival (HR=0.88, 95% CI: 0.81-0.96, P=0.004) while reduced
acculturation in a neighborhood over time was least protective (HR=0.995, 95% CI:0.87-1.14)
compared to remaining in a lower acculturated neighborhood. Conclusion: Those who continue
to reside in higher ethnic enclaves (lower acculturated neighborhoods) over time are at greater
risk for negative health outcomes. Future research can benefit from further exploring the
influence of these changing sociodemographic components with information on other lifestyle
mediating factors such as diet, physical activity, and social support.
INTRODUCTION
Childhood Cancer Survivors (CCS)
Each year, approximately 15,000 children are diagnosed with cancer in the United States
(US Cancer Statistics Working Group, 2017). With technological advancements and improved
treatment modalities, survival rates are now well over 70% (Curry et al., 2006). This has resulted
in a growing population of survivors who face unique challenges because of their prior cancer.
Long-term impacts of cancer, commonly termed late effects, can include recurrence of disease,
new malignancies, cardiomyopathy, psychosocial complications, and early mortality because of
70
lifesaving therapies (Hudson et al., 2003), (Nathan et al., 2009). Therefore, consistent, survivorfocused care engagement is imperative for this population’s long-term health and survival.
However, research shows that adherence to guideline recommended surveillance and
attendance to consistent follow-up care remains sub optimal (Nathan et al., 2010). Moreover, the
likelihood of receiving survivor-focused care decreases for vulnerable populations such as
Hispanics and African Americans (Casillas et al., 2015).
A clear understanding of the influential components that drive follow-up care attendance
and improve overall survivor outcomes is very important. The cancer care continuum (shown in
Figure 1) is an organizational framework that outlines the varying levels of care experience and
influence one may face throughout their cancer journey, from diagnosis to survivorship (Taplin
et al., 2012). As depicted in Figure 1, cancer care can be impacted contextually from the level of
the individual patient all the way to the nation’s health policy environment (Taplin et al., 2012),
(Zapka et al., 2003). Each level of influence is linked to the quality of cancer care individuals
receive and in turn, their cancer-related outcomes (Taplin et al., 2012). Expanding knowledge of
the many variables affecting cancer care and health-related outcomes will inevitably support the
improvement of survivor intervention strategies.
The Role of Sociodemographic Factors in Cancer Survivor Outcomes- Sociodemographic
factors are common mediators in the relationship between late effects of treatment and early
mortality among CCS (Landier et al., 2006). Such inequalities appear on both individual and
community levels of impact. From a global view, data on the survival of childhood leukemia
71
showed that survival disparities between levels of socioeconomic status were significantly more
apparent in the United States (Petridou et al. 2015), demonstrating that health inequity continues
to be a pressing issue in this country when it comes to cancer survival.
While more specifically, a population-based study of common childhood cancers in the
United States reveals lower rates of survival among Hispanics compared to non-Hispanics
(Keegan et al., 2016) – highlighting inequitable improvements in survival by ethnicity. Living in
neighborhoods of lower socioeconomic status in the US has also been associated with lower
survival among Hispanics compared to non-Hispanics (Keegan et al. 2016). In the diverse
population of the United States, there is a need to examine sociodemographic factors both across
ethnicities and within ethnic subgroups to better understand the drivers of inequitable survival.
As nearly 1 in 5 people in the United States identify as Hispanic, it is the largest minority group
in the country (US Census Bureau, 2020), and an important subset of the CCS population to
examine.
Changes in Sociodemographic Factors Over Time Among CCS- As a result of early
diagnosis in life, CCS are likely to experience variation in sociodemographic variables such as
socioeconomic status and acculturation across their lifetime. Their young adult years after cancer
(often defined as those aged 18-39years) is likely to include changes in geographical location as
individuals may attend college, move away from family, move in with a significant other, etc.
Socioeconomic status on an individual and community level may shift over time as survivors
gain independence from family and emerge into adulthood. These individuals, many of which
can be referred to as young adult survivors of childhood cancer (YACCS), may either experience
72
change in their neighborhood characteristics if they remain in the same geographical area as their
diagnosis (by neighborhood demographics shifting over time), or change in their individual
sociodemographic characteristics from personal changes such as moving states, developing a
career, or marriage. Therefore, it is important to recognize the greater probability of change in
this population and assess cancer-related outcomes in a way that can account for this variability
on the individual and or/neighborhood (community) scale.
Short-term Versus Long-term Survival - Considering the prospect of changes that can
occur to sociodemographic factors over time among CCS, it is most valuable to assess such
components over a large span of time to understand their full impact. Social disparities and the
outcome of survival have mostly been examined through the lens of short-term survival (i.e. 5-
years), while long term survival, typically assessed up to 30-years, has been less commonly
explored. So far, research studying long-term survival of CCS have looked at trends associated
with treatment improvements(Mertens et al., 2008) (Reulen et al. 2010) and cancer treatment
disparities (Armstrong et al. 2016). A recent study by Keegan et al. explored ethnicity and SES
as predictors of long-term survival among those diagnosed with Hodgkin’s Lymphoma between
the ages of 15-39 and found that Hispanics and those living in low SES neighborhoods had
worse cancer-specific survival (Keegan et al., 2016). However, this study did not report results
on varying lengths of survival, which may coincide with changing social disparities in the
lifespan. Exploring the patterns of sociodemographic changes in this population should be
considered in relation to long-term survival.
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The Relationship Between Socioeconomic Status and Survivor Care/Outcomes- Research
on socioeconomic status has well explored the idea of this sociodemographic factor predicting
health behaviors among cancer survivors. This is important because the relationship between
social factors and survival may be mediated by one’s willingness to take care of their health and
engage in health-related practices such as follow-up care for cancer survivors. Studies show that
health-protective behaviors may be predicted by socioeconomic status (Tyc et al., 2001). For
example, young adolescent cancer survivors (aged 10-18 years and 1-4 years post cancer
treatment) from higher SES were involved in health-protective behaviors more often than those
from lower SES levels (Tyc et al., 2001). The health-behaviors typically examined among cancer
survivors generally (without age specification) in relation to SES have been lifestyle factors such
as physical activity, tobacco, and alcohol use (Naik et al., 2014). But it is likely that survivors
who adopt protective health behaviors (i.e., regular physical activity and healthy eating) are also
more likely to be aware of their health status and engage in consistent care to maintain good
health – a predictor of long-term survival.
On a community level, the research on SES and health behavior among cancer survivors
is quite limited, however, some have assessed survival outcomes. A recent review of the
literature on cancer survivorship indicates that neighborhood metrics have primarily been looked
at for survivorship disparities, primary care, and weight management (Namin et al., 2021). One
study using Surveillance, Epidemiology, and End Results (SEER) data in 2014 showed that
patterns of absolute and relative disparity in survival between non-Hispanic whites and Hispanics
differed by neighborhood SES across breast cancer cases (Kish et al., 2014). It is valuable to
understand the influence of community level metrics such as nSES in relation to ethnic
74
disparities in health behaviors and health outcomes. Further, less commonly explored
sociodemographic measures related to CCS such as acculturation/ethnic enclaves may also play a
role in health behaviours and future survival outcomes.
The Relationship Between Acculturation and Survivor Care/Outcomes- Acculturation –
defined as the adaptation to a new culture (Gomez et al., 2015) is an important community level
factor related to cancer survival. This area has not been well explored among childhood cancer
survivors; however, research has identified several associations between acculturation, health
behaviors and survival among adult cancer survivor patients (Gomez et al., 2015). For example,
a study of cervical cancer mortality showed that among Hispanic women in California,
neighborhood acculturation moderated the association between nativity and cervical cancer
mortality (Gomez et al., 2015). This meant that foreign-born women had lower mortality than
US-born women in high ethnic enclaves (low acculturation neighborhoods) (Gomez et al., 2015).
Similarly for men, the survival advantage of being a foreign-born male with prostate cancer was
more apparent in less acculturated neighborhoods (Schupp et al., 2014). To add, a literature
review of neighborhood level factors in population-based cancer research identified associations
between acculturation and health care utilization, access, and health behaviors (Gomez et al.,
2015) – all of which can be considered factors contributing to long-term health outcomes.
Overview- The following study will explore the long-term survival patterns among
childhood cancer survivors diagnosed in California between 2006-2020 and assess potential
differences by race/ethnicity as well as neighborhood SES and acculturation. Specifically, it will
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explore the possible impacts of changes in neighborhood SES and acculturation on long-term
survival over a 10-year period.
METHODS:
Participants
The California Cancer Registry (CCR) is a statewide population-based cancer
surveillance system which identifies childhood cancer cases of all cancer diagnoses. For this
study, registry cases of those diagnosed with malignant cancer under the age of 18 years between
2006 and 2020 (inclusive) were extracted. Cases that were reported post-death were excluded for
the purpose of this study.
Measures
Demographic and clinical variables on individuals diagnosed with cancer before the age
of 18 years were collected from the CCR. Measures obtained included year of diagnosis, age,
sex, stage, histology, insurance status, race/ethnicity, and socioeconomic status. In addition to
what was available through the CCR, a neighborhood-level variable for ethnic enclave
(acculturation) was later created using state-wide Census data. Further details on the calculation
of this neighborhood-level measure are specified below.
Race/Ethnicity
This variable was derived from the CCR dataset and included the mutually exclusive
categories of Hispanic, non-Hispanic Black, non-Hispanic White, Asian/Pacific Islander, nonHispanic American Indian, Middle Eastern, and other/unknown. This information is recorded by
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healthcare facilities according to specific identification algorithms in the patient medical records,
from which it is then abstracted to CCR (Havener., 2004).
Neighborhood Socioeconomic Status (nSES) - Neighborhood SES was utilized based on
self-reported patient residence at time of diagnosis. The address at diagnosis was geocoded for
each case using Texas A&M University’s Geo-services (https://geoservices.tamu.edu/) to link to
neighborhood census-derived variables from California state-wide Census data. This measure
was calculated and assigned to all CCR cases using seven census tract-level indicator items from
the US Census (Yang et al., 2014) (Yost et al., 2001). These included education, ratio of
household income to poverty line, employment, blue collar employment, median rental, median
value of owner-occupied housing, and median household income. Specifically, 2010 census data
was used for patients diagnosed between 2005-2014, and 2019 census data was used for those
diagnosed 2015 onwards. California statewide distribution for each respective year of data was
used to assign SES quintiles to each tract.
Neighborhood Ethnic Enclaves (Acculturation) - Hispanic neighborhood acculturation
(for the purpose of this study referred to interchangeably as ethnic enclave) is an index that was
created through principal component analysis based on US Census data for California census
tracts. Data from 2010, 2017 and 2019 was extracted for this and loaded into SAS. To recreate
the composite measure of Hispanic ethnic enclave created by Gomez and colleagues, the
following variables were included in the index score calculation: percent linguistically isolated,
percent linguistically isolated who speak Spanish, percent speaking limited English, percent
Spanish speaking who speak limited English, percent recent immigrants, percent Hispanic, and
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percent foreign born. Principal components were extracted based on an eigenvalue cut off of
greater than 1, as well as the evaluation of scree plots and interpretability. For this analysis, the
number of components to retain was not specified. The final composite index of ethnic enclave
was consistent for each time point (2010, 2017, and 2019) and included all 7 of the variables
loaded onto a single component.
The ethnic enclave variable was then formed into quintiles where lower scores represent
lower ethnic enclave status, or higher neighborhood acculturation (i.e. a neighborhood with
lower ethnic density and higher English language proficiency). For further statistical analysis in
assessing the impact of change in acculturation, a variable of “Ethnic Enclave Change” was
created to represent change in ethnic enclave between 2010 and 2019 (using 2010 as the
reference time-point). Quintiles 1 and 2 were combined into low ethnic enclave status (high
acculturation) and quintiles 3, 4, and 5 were combined into high ethnic enclave status (low
acculturation). From this, the two categories were subtracted from one another to show the
direction of change between 2010 and 2019. For analysis of this variable in cox regression
models, the “Ethnic Enclave Change” variable was categorized into four groups: “stayed highly
acculturated”, “stayed in low acculturation”, “increased acculturation”, and “lowered
acculturation”.
Survival Time - To assess long-term survival, survival time in months was calculated
from the CCR date of diagnosis variable to 1) date of death, or 2) date of last contact. The CCR
data provided information on date of death and last contact.
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Nativity- The California Cancer Registry provided information for a nativity variable
which indicates whether someone was born in the United States, born outside of the United
States, or has unknown status of birth location. This was abstracted from patient medical records,
however, data on this variable is limited following 2006.
Statistical Analysis
Statistical analysis for this study was conducted using SAS V9.4. To explore the impact
of change in acculturation on long term survival, principal component analysis of relevant
acculturation variables was first conducted on 2010, 2017, and 2019 5-year American
Community Survey (ACS) data, to assess the frequencies of acculturation at each of the Census
time points. Principal component analysis was utilized to obtain a composite index of Hispanic
ethnic enclaves in accordance with information provided by Gomez and colleagues (Gomez et
al., 2015). Data from 2010, 2017 and 2019 were then merged to a single dataset for ethnic
enclave quintile comparison.
With the objective of assessing changes in acculturation between two time points of
Census data (2010 and 2019), it was important to establish that a sufficient amount of change
had occurred over time to support further statistical modelling. Additionally, it was important to
establish that the number of Census case data available for ethnic enclave calculation was
relatively consistent between 2010 and 2019 so that future comparisons, regardless between
these time periods, regardless of baselines used, were relevant across the full dataset. The
number of differences in ethnic enclave quintiles between 2010 and 2019 were evaluated,
confirming enough change to warrant further multivariable investigation. The dataset was then
combined with the extracted CCR data for univariate and multivariate analysis. A Table 1 of
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general demographic characteristics was created to examine means and frequencies of the
categorical and continuous variables of interest.
Univariate Cox proportional hazards models were first used to estimate hazard ratios with
95% confidence intervals for the association between overall mortality and change in
acculturation between 2010 and 2019. Log-log plots were used to assess the proportional hazards
assumption by testing whether the slopes of the Schoenfeld residuals within the Cox model by
time were significantly different from zero, and by modeling the interaction between the
predictors and time. No violation of the proportional hazard’s assumption was observed. KaplanMeier plots for 2010 and 2019 overall survival were also evaluated, testing for homogeneity and
statistically significant differences between plot lines using the Bonferroni test for multiple
comparisons.
New Variable Creation – Ethnic Enclave Change
Prior to adjustment for other variables in the model, a new variable of the degree of
ethnic enclave change was created to understand change in acculturation across the five quintiles
(without specificity of the exact quintile levels of change). Five new categories were created that
represented a change in ethnic enclave by an increase in two levels, increase in one level, no
change, decrease in one level, and decrease in two levels. The dose response relationship
between the degree of ethnic enclave change and survival by hazard ratio was examined using no
change as the reference point. Product limit estimates for 2010 and 2019 datasets were then
independently evaluated.
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Multivariable Cox regression models were then applied using the original ethnic enclave
change measure by adjusting for demographic and clinical cofactors of sex, age, insurance status,
neighborhood SES, and race/ethnicity.
Sensitivity Analysis- Within the Census data, there is a variable that assesses the quality
of geocoded locations (patient’s address at diagnosis) assigned to the census tract. Considering
that this geocoded information is then used to calculate variables such as neighborhood SES and
acculturation, it is important to understand its validity. Patient address at time of diagnosis can be
geocoded based on a complete street match (high level of certainty), zip code match only (low
level of certainty), or inability to geocode at the time (missing information). For sensitivity
analysis of our data, the sample was restricted to only those with the highest levels of census
tract certainty on residential information to assess whether variation in missing information may
have impacted survival analysis results.
Additionally, considering similarities in neighborhood SES and ethnic enclave measures,
it was important to assess whether the impacts of ethnic enclave were tied to neighborhood SES.
Multivariable models were calculated with and without neighborhood SES as an adjusted
cofactor to evaluate whether parameter estimates of ethnic enclave change differed significantly.
RESULTS
The analytic sample consisted of 32,693 childhood cancer survivors. Table 1 below
provides a summary of the sample’s sex, race, insurance status, marital status, nativity,
comorbities and socioeconomic status. Approximately 50% of the sample was male, 47%
Hispanic-white, 57% insured, 97% single, 50% US-born, 34% with low comorbidities, and an
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even distribution across socioeconomic status quintiles. It is important to note that the nativity
variable from the CCR was unavailable for over 50% of the sample from 2006 onwards,
resulting in 45% of unknown nativity information within the sample.
Table 5. Descriptive Statistics of The Ethnic Enclave Data Sample, N=32,693
Full Cohort
(N=32,693)
Sex N (%)
Male 17,260 (52.8)
Female 15,424 (47.2)
Race
Non-Hispanic White 10,638 (32.54)
Hispanic White 15,571 (47.63)
Black 1,823 (5.58)
Asian Pacific Islander 3,580 (10.95)
Other 1,081 (3.31)
Insurance Status
Not Insured/Unknown 1,320 (4.04)
Medicaid 12,784 (39.10)
Insured 18,589 (56.86)
Marital Status
Single (never married), Separated, Divorced or
Widowed 31,910 (97.60)
Married or in a Domestic Partnership 187 (0.57)
Unknown 596 (1.82)
Nativity
Foreign Born 1,645 (5.03)
US Born 16,181 (49.49)
Unknown 14,867 (45.47)
Comorbities
Low 11,169 (34.16)
Moderate 2,631 (8.05)
High 211 (0.65)
Unavailable 18,682 (57.41)
SES Quintile
Lowest SES 7,875 (24.09)
Lower-Middle SES 6,882 (21.05)
Middle SES 6,251 (19.12)
Middle-Upper SES 5,842 (17.87)
Upper SES 5,843 (17.87)
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Univariate Survival Analysis of Ethnic Enclave Change
A univariate analysis of survival in relation to ethnic enclave change showed that in
comparison to staying in a high ethnic enclave (neighborhood of low acculturation), an
individual that transitioned from high to low had a 9% risk reduction (HR=0.91, 95% CI: 0.79-
1.05), transitioning from low to high had a 4% reduction of risk (HR=0.96, 95% CI: 0.84-1.09),
and remaining in a low ethnic enclave (highly acculturated neighborhood) had a 25.4% risk
reduction (HR=0.74, 95% CI: 0.70-0.79). These results are presented in Table 2.
Table 6: A Univariate Cox Regression Model of Ethnic Enclave Change in Relation to Overall
Survival For the Full Data Sample (N=32,464) of CCS Diagnosed in California Between 2006-
2020.
Parameter HR 95% CI P-Value
Increased Acculturation (High to Low Enclave) 0.910 0.79-1.05 0.185
Lowered Acculturation (Low to High Enclave) 0.959 0.84-1.09 0.522
Stayed Highly Acculturated (Remained Low Enclave) 0.746 0.70-0.79 <0.0001
Multivariable Survival Analysis
Overall Sample
When the model was adjusted for demographic covariates of sex, age, race, and SES, the
progression of impact across levels of ethnic enclave change remained the same. These results
are presented in Table 3 below. A neighborhood that transitioned to lower acculturation (low
ethnic enclave to higher ethnic enclave change) was the least protective, with a risk reduction of
0.05% (HR=0.995, 95% CI:0.87-1.14). A neighborhood that increased to greater acculturation
(high ethnic enclave to low ethnic enclave change) has a risk reduction of 2.5% (HR= 0.97, 95%
CI:0.85-1.12). However, neither result was statistically significant at the p<0.05 level. Lastly,
remaining highly acculturated (in a low ethnic enclave), was the most protective and statistically
significant at the p<0.05 level (HR=0.88, 95% CI: 0.81-0.96, P=0.004).
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With regards to covariates, sex, race, and insurance status were statistically significantly
related (p<0.05) to the relationship between ethnic enclave change and overall survival. Being
female compared to male, had a risk reduction of 17.1% (HR=0.82, 95% CI: 0.78-0.87,
P<0.0001), while Black (HR=1.35, 95% CI: 1.19-1.53, P<0.001) and Asian/PI (HR=1.23, 95%
CI: 1.12-1.37, P<0.001) race had an increased risk for death compared to Non-Hispanic Whites.
Lastly, those who were insured or had Medicaid, compared to non-insured survivors, had a risk
reduction of 49.8% (HR=0.52, 95% CI: 0.44-0.57, P<0.001) and 38.2% (HR=0.68, 95% CI:
0.54-0.71, P<0.001) respectively.
Model with Hispanics Only
When the model was applied to a subset of the sample, those identified as Hispanic White
(N=16,037), the protective nature of each ethnic enclave change category increased. Among
Hispanics, a neighborhood that increased to higher acculturation (high ethnic enclave to low
ethnic enclave change) showed a risk reduction of 11.4% (HR=0.89, 95% CI:0.73-1.09). A
neighborhood that lowered in acculturation (low ethnic enclave to high ethnic enclave change)
had a risk reduction of 12.5% (HR= 0.87, 95% CI:0.72-1.05). Similarly, neither result was
statistically significant at the p<0.05 level. Lastly, remaining highly acculturated (in a low ethnic
enclave), was once again the most protective and statistically significant at the p<0.05 level
(HR=0.84, 95% CI: 0.75-0.95, P=0.005).
Assessing covariates in this subsample, similarly, sex and insurance status were
statistically significantly related (p<0.05) to the relationship between ethnic enclave change and
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overall survival. Being a Hispanic female had a risk reduction of 18.2% compared to Hispanic
males (HR=0.81, 95% CI: 0.76-0.88, P<0.0001), while Hispanics who were insured or had
Medicaid, compared to non-insured Hispanic survivors, had a risk reduction of 50.7% (HR=0.49,
95% CI: 0.41-0.59, P<0.001) and 40.3% (HR=0.59, 95% CI: 0.49-0.72, P<0.001) respectively.
Census Certainty Assessment
The survival analysis model was also subset for those whose geographic information had
the highest census certainty (N=31,576). The hazard ratio results of this are displayed in Table 3
below. The results remained consistent with what was found in the full dataset model,
confirming that low-certainty geocoded data was not playing a role in changing the hazard ratio
results.
Table 7: The Multivariable Cox Regression Models of Ethnic Enclave Change Over 10-Years in
Relation to Overall Survival for the Full Dataset (N=32,464), Those with Highest Census
Certainty (N=31,576), and Hispanic CCS Only (N=16,037) Among Those Diagnosed in
California Between 2006 and 2020.
Full Data Set (N=32,464)
Census
Certainty
(N=31,576)
Hispanics Only (N=16,037)
Parameter HR 95% CI P-Value HR HR 95% CI P-Value
Increased Acculturation
(High to Low Enclave)
0.975 0.85-1.12 0.723 0.958 0.896 0.73-1.09 0.285
Lowered Acculturation
(Low to High Enclave)
0.995 0.87-1.14 0.935 0.983 0.875 0.72-1.05 0.162
Stayed Highly
Acculturated (Remained
Low Enclave)
0.884 0.81-0.96 0.004 0.889 0.846 0.75-0.95 0.005
Sex – Female 0.829 0.78-0.87 <.0001 0.829 0.818 0.76-0.88 <.0001
Age 0.997 0.99-1.00 0.261 0.997 1.005 0.99-1.01 0.110
Hispanic White 1.060 0.98-1.15 0.145 1.053 - - -
Black 1.353 1.19-1.53 <.0001 1.361 - - -
Asian/PI 1.238 1.12-1.37 <.0001 1.241 - - -
Other/Unknown 0.428 0.35-0.57 <.0001 0.438 - - -
Insured 0.502 0.44-0.57 <.0001 0.500 0.493 0.41-0.59 <.0001
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Medicaid 0.618 0.54-0.71 <.0001 0.615 0.597 0.49-0.72 <.0001
Highest SES 0.941 0.85-1.05 0.256 0.933 0.902 0.72-1.13 0.368
Lower-Middle SES 1.082 0.97-1.20 0.140 1.084 0.989 0.84-1.16 0.889
Lowest SES 1.105 0.99-1.23 0.074 1.109 1.028 0.87-1.21 0.731
Middle SES 1.100 0.99-1.21 0.058 1.106 1.041 0.88-1.22 0.618
*There are 3 multivariable models represented in the table above that assess ethnic enclave change over a 10-year period, all of
which were adjusted for sex, age, ethnicity (excluding the Hispanic only model), insurance status, and SES.
Sensitivity Analyses
For sensitivity analysis, as mentioned above, the sample was restricted to only those with
the highest levels of census tract certainty on residential information to assess whether variation
in missing information (low census certainty) may have impacted survival analysis results.
Results presented in Table 3 indicate no significant change.
Additionally, considering the similarities in neighborhood SES and ethnic enclave
measures, multivariable models were calculated with and without adjustment for neighborhood
SES to evaluate whether parameter estimates of ethnic enclave change differed significantly. As
with census tract certainty, the results of the cox proportional hazards model did not change
significantly to warrant further stratified analysis.
Lastly, a categorical variable of diagnosis period was created for those diagnosed before
2010, between 2010 and 2019, and diagnosis after 2019. During the statistical analysis process,
this measure was used to assess whether ethnic enclave frequency patterns were consistent across
periods of diagnosis. It was confirmed that quintile frequencies remained similar over time,
eliminating the need for splitting the data analysis.
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DISCUSSION
Overall Findings - To the best of our knowledge, the current study is one of the first to
evaluate the impact of change in neighborhood acculturation, measured by ethnic enclave, on
long term survival of CCS. The results collected add to a new growing body of information on
geospatial factors that impact health outcomes of CCS. This study aimed to examine Hispanicspecific neighborhood acculturation and socioeconomic status impacts on survival of CCS using
Census Tract and CCR data. Using this long-term data, we were able to capture changes in
neighborhood acculturation over a 10-year period and understand its relationship to survival
outcomes.
Results in Relation to the Cancer Care Continuum- Obtaining information on the levels
of influence that span the cancer care continuum is important – particularly for CCS and YACCS
who are vulnerable to late effects for the rest of their lives. Neighborhood SES and neighborhood
acculturation play an important role on the local community level of the cancer care continuum,
which may translate to impact on patient’s quality of care, follow-up care attendance and overall
health outcomes. Furthermore, changes in such sociodemographic factors over time, particularly
among young adult survivors of childhood cancer who may be likely to experience shifts in these
variables across their lifespan, can also influence one’s health outcomes of survival. At this time,
it is not clear how changes in nSES and acculturation may impact health behaviours of CCS
(such as follow-up care attendance) that could predict long term survival, highlighting an area for
further exploration.
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A Unique View of Socioeconomic Status Among CCS- The information gathered from this
study is distinct from the research to date on SES (individual and community level), ethnicity
(Reeves et al., 2021), and acculturation among CCS (Tobin et al., 2018). Research on
neighborhood SES in relation to long-term outcomes has been commonly measured at the time
of diagnosis and is typically most relevant to parental house-hold income. Limited work has
assessed this variable at multiple time points among CCS, which is important within this
population that is likely to change SES while transitioning through the stages of adulthood.
A Unique View of Neighborhood Acculturation - Assessments of acculturation at a fixed
time-point have shown positive associations between acculturation and post-traumatic growth
among CCS (Tobin et al., 2018), as well as higher levels of life satisfaction among loweracculturated Hispanic cancer survivors (Stephens et al., 2010). However, similarly to
neighborhood SES, measurements of this variable were taken either at diagnosis or at the time of
study survey. While single time points of these measures can provide important information
about predictive factors of survival, for certain populations, such as YACCS, consideration of
these predictors over a longer span of time may be of greater benefit.
Interpreting the Impacts of Neighborhood Acculturation (Ethnic Enclave) Changes Over
Time - This study found that remaining in a highly acculturated neighborhood was the most
protective for overall survival in comparison to CCS who stayed in low acculturated
neighborhoods. Importantly, this result was statistically significant in both univariate and
multivariate modeling. Among studies of cancer survival, not specific to CCS, most have shown
lower rates of survival among Hispanics residing in higher ethnic enclaves (Gomez et al., 2015).
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However, it is important to consider that majority of studies have assessed typical 5-year survival
patterns, while for the present study, we were able to evaluate longer-term survival outcomes.
Considering the limited data available for comparison, we examined the literature on
ethnic enclave impacts among cancer incidence and outcomes more broadly – which showed
varying levels of influence. For instance, data examining the impacts of ethnic enclaves at a
single time point on endometrial cancer mortality among Hispanic and Asian American/Pacific
Islanders in California found that living in an ethnic enclave (lower acculturated neighborhood)
was associated with lower all-cause mortality risk for Asian American/Pacific Islanders (Von
Behren et al., 2018). In contrast, a separate study on cervical cancer incidence among Hispanics
and Asians in California found that Hispanic women living in high ethnic enclave neighborhoods
had significantly higher rates of cervical cancer diagnosis compared to those living in low ethnic
enclaves (Froment et al., 2014).
In accordance with our findings, it is possible that the benefits of a neighborhood
remaining more acculturated may include higher levels of social supports, higher quality of
healthcare, high quality food sources, lower poverty concentration and improved mental health –
ultimately resulting in better health outcomes for CCS. In contrast to this idea, some research has
pointed to the possibility that higher levels of acculturation may lead to fewer positive health
behaviours and therefore worse health outcomes – a hypothesis known as the “low acculturation
hypothesis” (Abraido-Lanza et al., 2005) – however, this has not been shown to be the case
among CCS. As a unique population that greatly benefits from on-going, survivor-focused care
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and consistent positive lifestyle factors, the advantages of residing in a neighborhood that
remains or becomes highly acculturated may be more influential for this group of survivors.
Survivors whose neighborhood lowered in acculturation were the least protected with
regards to long-term survival. This represented those whose neighborhood shifted from a
neighborhood of low ethnic enclave to higher ethnic enclave – however, the result was not
statistically significant. The protective nature of remaining in more highly acculturated
geographic areas over time seems to suggest that stability in one’s neighborhood acculturation is
more favorable to experiencing changes in neighborhood acculturation when it comes to overall
survival. Moreover, the results of the acculturation effects, measured through ethnic enclave
quintiles, importantly remained consistent with and without neighborhood SES present in the
model, reinforcing the distinct impacts of changing acculturation as a separate predictor to what
has previously been found in the literature on neighborhood SES.
Addressing Other Relevant Cofactors - With regards to race and ethnicity, our results also
showed that Non-Hispanic White CCS were most protected in terms of overall survival
compared to Hispanic-Whites, Blacks and Asian/PI. This information was statistically significant
in all models and is consistent with the literature on race/ethnicity and health outcomes among
CCS (Reeves et al., 2021). The results of assessing insurance status of CCS showed that health
insurance coverage of any type (private insurance or Medicaid) was significantly more protective
to overall survival compared to those who are not insured. This is similarly consistent with
existing literature on this topic (Casillas et al., 2011).
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Implications - The results of this study provide a unique contribution to the knowledge of
socio-cultural factors that impact long-term survival of CCS. Research to date on cancer survival
has well defined the effects of factors such as race/ethnicity, SES and insurance status, to which
we can now contribute a unique and additional predictive component of CCS outcomes.
Additionally, since the likely age of survivors in this study is within the adolescent and
young adult range of 19-39 years, it is important to consider which sociodemographic measure
best represents this specific population. Assessing neighborhood SES for adolescents and young
adults who may be in transitory stages of life, such as pursuing higher education, in search of
work, or starting a family, may provide less valuable insight compared to the measure of
changing acculturation, which may be more likely to occur among this subset of individuals. For
this reason, it would also be beneficial to examine changes in acculturation according to the
individual’s movements.
STRENGHTS & LIMITATIONS
The strengths of this study include the novelty of assessing longer-term survival data on
all childhood cancer diagnoses from 2006 to 2020 – which has not been commonly explored
among CCS. Additionally, the exploration of neighborhood SES and acculturation changes
between a 10-year period, provides a unique component to this study which has not been well
assessed within the CCS population.
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Geographic Area-based Limitations- It is important to interpret and extrapolate the
results of this study within the context of some existing limitations. Firstly to clarify, it is the
change in a survivors neighborhood acculturation (captured at time of diagnosis) that is
evaluated in this study, as opposed to the individual’s movement themselves. Therefore, for the
interpretability of the results, there is an assumption that survivors have remained within the
same neighborhood for the 10-year period examined. It is important to consider that the average
rate of neighborhood change in acculturation among survivors is unknown. Therefore, we cannot
be sure that the results found in this study represent a normal rate of change, or whether we may
have missed some instances of variation in between. However, taking into account the specific
ethnic enclave categories that were created to measure change, there would need to be a very
specific scenario in which the individual’s neighborhood changes enclave status and their change
was not captured. For example, an individual’s neighborhood may have initially decreased
neighborhood acculturation and then later increased neighborhood acculturation within the 10-
year window, for which, we would not have captured the intermediate change. However,
scenarios of this type are likely uncommon and more importantly, would likely have little impact
on the overall results.
Like all population-based cancer registry analyses, we were unable to utilize individuallevel socio-demographic data and were limited by some degree of missing data. Secondly,
although the measure of acculturation, represented through ethnic enclave quintiles, is not
specific to AYA, it has been assumed that given the selected age of diagnosis under 18 years,
majority of survivors will be within the age range of 19-39 years, categorizing them as AYA.
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Individually Relevant Survivor Limitations - The ethnic enclave measurement was
calculated specific to Hispanic measures, and particularly relevant to the California
demographic. However, this measurement can similarly be replicated among other race
ethnicities such as Asian/PI and Black’s by extracting the same race/ethnicity-specific census
data variables that were used for Hispanics and applying the principal components analysis
process to deduce the appropriate composite measure.
Lastly, we must account for the possibility that lifestyle factors among this population
may mediate, moderate, or confound the observations of this study. For instance, previous
studies have suggested that physical activity, diet, and social support may influence changes in
survival rates among Hispanic immigrants (Viruell-Fuentes, 2007).
CONCLUSION & FUTURE IMPLICATIONS
In conclusion, the findings from this study indicate that among childhood cancer
survivors, remaining in a highly acculturated neighborhood was most protective to overall
survival. The results of assessing these sociodemographic variables in a time-varying manor adds
valuable information to the literature and can help support future development of interventions
for CCS. With the knowledge that those who continue to reside in higher ethnic enclaves over
time are at greater risk for negative health outcomes, survivor-specific resources may be better
allocated to these neighborhoods. Future research can also benefit from further exploring the
influence of these time-varying components with information on other lifestyle mediating factors
such as diet, physical activity, and social support.
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105
FIGURES
Figure 1 – Multiple levels of influence along the cancer care continuum (Taplin et al., 2012)
*MD = physician.
Figure 2: Adaptation of the continuum of care framework for YACCS survivors – A
representation of the levels of influences explored in the dissertation
YACCS Care
Engagement
Surveillance
Aderence
Prevention of Early
Mortality/Morbidity
(Long Term
Survival)
Barriers & Facilitators
to Care (i.e., cultural
beliefs, community
level factors, etc.)
Care
Experiences
Patient Education
106
Figure 3: Example of COG surveillance guidelines for survivors at risk for cardiac disease
(Children’s Oncology Group, 2013)
107
Figure 4: Cancer care continuum re-modeled as key themes and subthemes from transcript
analysis of cancer care experience study
Figure 5: Cancer care continuum re-modeled as key themes and subthemes from transcript
analysis of health beliefs study
Influence on Care Practices & Engagement
Influence on Cancer-Related Health Outcomes
Macro-Environmental
Agents
Organization and/or
Practice Setting
Provider/Team
Family & Social
Supports
Individual
Patient
SUBTHEMES:
v Personal Health Practices to
Support Well-Being
v Personal Health Views (Including
Awareness of Risks)
SUBTHEME:
v Family Support With Health
SUBTHEMES:
v General Care Experiences
with Care Provider
v Changing of Provider
(Including Transition of Care)
v Frequency of Care
v Relationship with Provider
v Quality of Care
SUBTHEME:
v Experiences with Insurance
Provider
v Patient Education Resources
SUBTHEME:
v Barriers to Seeking Care
Influence on Care Practices & Engagement
Influence on Cancer-Related Health Outcomes
Local Community
Environment
Organization and/or
Practice Setting
Provider/Team
Family & Social
Supports
Individual
Patient
SUBTHEMES:
v Personal Cultural Identifications
and Related Health Beliefs
v Religious and Spiritual Beliefs
v General Health Beliefs
SUBTHEME:
v Family Health Beliefs and
Influence
SUBTHEME:
v Geographical Location of
Home Community
108
APPENDIX 1: PROJECT FORWARD INTERVIEW GUIDE
INTERVIEW GUIDE – PROJECT FORWARD
Welcome and Recap of Study
Interviewer: Welcome! Thank you for taking my call today. My name is _________. As you know, I am
from Project Forward which is a study at the University of Southern California, Department of Preventive
Medicine and CHLA. We asked to speak with you today because we wanted to get more about your
thoughts and feelings surrounding health and health care. Our goal is to use your suggestions to help
improve the health and well-being of people in Los Angeles and the rest of the country. Our talk should
take no more than sixty minutes. It is important to emphasize that there are no right or wrong answers;
we are simply hoping to hear your honest thoughts and opinions. With your permission, could we record
the conversation?
Consenting Participants
The interviewer will ask participants to give verbal consent before starting the discussion.
Interviewer: I am going to start recording now and the first thing I should go over is to record that you
are giving us permission to speak with you today and to record your answers. Your participation is
completely voluntary. Your refusal to participate will involve no penalty or loss of benefits to which you
are otherwise entitled. Also, if any question makes you uncomfortable you can skip any question at any
time. It will not affect any current or future relationships with your health care provider or USC. You may
withdraw your participation at any time without giving up any legal claims or rights. If you consent to
participate in the interview, please say “I consent” Thank you.
Obtain verbal consent from participant. -The interviewer will pose the following questions:
GENERAL WARM UP QUESTIONS
1. Let’s start by just asking - how are you? Physically and emotionally? How do you feel?
2. Tell me about a typical day- What do you do on that day? Where do you go? Who do you see?
Who do you talk to? What do you enjoy doing? We can start with yesterday what did you do?
3. Do you do anything to keep yourself healthy?
4. What are some of your health worries or concerns?
1. If participant has NO health concerns: What do you think are the biggest factors that help
you to feel healthy on a day-to-day basis?
2. If participant says YES to health concerns: What do you think you would need to do to
feel healthier on a day-to-day basis?
DOCTOR ACCESS / FOLLOW-UP CARE
5. About how often do you go to the doctor? What kinds of doctors?
a. Do you see any special doctors to follow-up with after your diagnosis? Oncologist? Any special
clinics?
i.Do you know about survivorship clinics?
1. If yes, which one(s)? How did you learn about it?
2. Have you ever visited one?
6. When was the last time that you went to the doctor?
. Tell me about that last visit – walk me through what happened. How did you go about scheduling
the appointment? Did you schedule the appointment or did someone help you (i.e. family, friend)?
a. Why did you go? What did you discuss?
109
b. Does your doctor know about your cancer?
7. What kind of care has been recommended to you to keep you healthy after having cancer?
. Were there screenings or tests that you are supposed to do? At certain times?
8. Have you been able to do the follow-up care that was recommended?
. Have you faced any challenges to getting the care that you need?
.For example, do you have problems making appointments with your doctor?
i.Do you have any issues getting referrals to see other doctors or specialists?
ii.Are there logistical barriers to getting the care you need? (Transportation, distance to the clinic, childcare,
finances, appointments interfering with your work, etc.?)
a. What makes it easier to get the care you need?
.Are the logistics easy for you? (Transportation, childcare, cost, distance to the clinic, etc.)
i.Do you feel comfortable talking to your doctors? Do they understand you?
ii.Do you feel motivated to keep getting the care you need? What motivates you?
iii.Do you have help from other people in your life? (segue into next question)
9. Do you have health insurance?
. If yes, what type? And where do you get it from? Work? Your parents? Covered California,
through the Affordable Care Act, or “Obamacare”?
a. What do you think of your insurance in general? Does it pay for what you need?
b. About how much is your cost per visit? Do you know what it covers?
TRANSITION
10. At what age did you change from seeing a pediatric doctor to adult doctor?
a. How was the process? Please explain (i.e. did you have any issues making this change?)
b. What was it like to change doctors for you?
SUPPORTIVE PEOPLE / FAMILISIM
11. A support system are people in your life who are there for you in times of need or worry or
sadness. Who do you consider part of your support system?
a. If you had questions about the care you need following cancer who would you talk to? Where
would you look?
b. Is there a family member or a friend or member of your medical team that is helpful with this?
i.IF YES: Who are they and how do they help?
12. Do you talk with family members about your cancer experience or the follow-up care that you
might need?
13. What role does your support system play in keeping you feeling healthy?
. Is anyone a helper or anyone a barrier?
HEALTHCARE SELF-EFFICACY
14. Where do you picture yourself in ten years? What are your long-term goals for yourself? Have
these goals changed over the years? Did your cancer experience change these goals (if applicable)?
15. Do you feel confident that you can get the care you need in the future? Why or why not?
16. Do your health concerns affect your life decisions? (e.g. what job you take or what training or
education you want?)
a. Do concerns about your health insurance affect your life decisions (e.g. do you stay in a job for
the benefits?)
b. Has your cancer experienced shifted your goal or priorities with school or work? If so has this
been negative, or positive?
FATALISM
110
17. Why do you think you had/got cancer? (e.g., was it bad-luck, fate, due to an injury, for a “cosmic
purpose”) Are there any secondary/other reasons?
18. Why you think “bad” things happen to “good” (or innocent) people?
19. -how much control do you have over your health? How do you use this control?
CULTURE
20. Do you identify with a particular culture or ethnicity? If so, which one?
a. Do you think that your culture affects your health? In what ways?
i.Do you feel that people in your culture have any challenges that other groups don’t
face when it comes to health issues?
21. Acculturation – which of these questions do you feel adequately (or do not adequately) reflects
your cultural identity?
111
UNMET NEEDS
22. (Show Unmet Information Needs Questionnaires – in Dropbox and attached in email from
Cynthia sent on 2/19/18) These are a list of areas that people feel like they need information about,
researchers call them unmet needs.
a. How could these be improved?
b. What needs are missing from these lists?
23. Where do you go (or who do you contact) to get information regarding your health, health care
and/or cancer experience?
. Have you used any social media support groups or information sources surrounding cancer? How
has it shaped your experience as a patient or a survivor?
24. What are some challenges CCS face in getting the information that they might need?
25. Has the information that you want/need regarding your health and health care changed since
diagnosis?
. What type of information did you want/need at diagnosis?
a. What type of information did you want/need during treatment?
b. What type of information do you want/need now?
26. Do you feel that your support system has enough information regarding your health, health care
and/or cancer experience? Where do they get their information from?
27. Has the information wants/needs of your support system changed since diagnosis?
. What type of information did they want/need at diagnosis?
a. What type of information did they want/need during treatment?
b. What type of information do they want/need now?
28. What could be done differently to better address your needs?
29. What could be done differently to better address your support system’s needs?
30. What is the best way to get information to CCS? Text? Handouts? Links to great websites?
. Does it matter who provides you this information?
a. Does the timing of when information is given to you matter? If yes, how so?
b. Would it be good to share this information with other important people?
31. If you have questions about issues or concerns or just things you want to know more about, who
would you prefer to speak to? A doctor, a nurse, a social worker, someone else? And how would you like
to speak with them (i.e. via phone, text, email, in person, etc.)?
32. Do friends and family help you get the information you need?
. If yes, how so? How could they further help you?
a. If no, how could they help you get you the information you need?
33. What do you know now that you wish you would have known when you first diagnosed? During
treatment? Right after you completed treatment?
IF TIME ALLOWS (optional items)
34. You may have heard that people can grow from negative life events, or that they benefited, or
experienced positive changes from their cancer experience, do you think this is possible? If yes, in what
ways? Did your religious or spiritual orientation help in any way?
35. Who are the most important role models for you in your life? (who gives you strength) At
work? At school? In your personal life?
36. Are you the role model for anyone? If so, whom? What does this look like?
37. What helped you get through the cancer experience?
38. How many of your friends know you had cancer? Why did you/did not tell them? What made
this easy/difficult? What were the benefits of (not) sharing this? What were the costs of (not) sharing this
information?
112
39. What about other people who have had cancer and need follow-up care? What are the biggest
issues do you think would they face?
40. What impressed or surprised you about your reaction to your diagnosis? How did your priorities
change? What changed in your relationships?
Conclusion
Interviewer: Thank you all for your time and support of this study. It is greatly appreciated, and we very
much value the feedback you have provided. Are there any questions or additional comments at this time?
This officially concludes our interview. If any further questions or comments arise, please do not hesitate
to reach out to Dr. Anamara Ritt-Olson, at ritt@usc.edu or (626) 487-7296.
Abstract (if available)
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Kagramanov, Dalia
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Core Title
Multilevel influences of care engagement and long-term survival among childhood, adolescent, and young adult cancer survivors
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Keck School of Medicine
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Preventive Medicine (Health Behavior)
Degree Conferral Date
2023-12
Publication Date
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Defense Date
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Tags
acculturation
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Experiences with Care
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