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A comparison of three different sources of data in assessing the adolescent and young adults cancer survivors

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A comparison of three different sources of data in assessing the adolescent and young adults cancer survivors

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A COMPARISON OF THREE DIFFERENT SOURCES OF DATA IN
ASSESSING THE ADOLESCENT AND YOUNG ADULTS CANCER
SURVIVORS
by
Irene Jiayao Chen

A Thesis Presented to the
FACULTY OF THE USC KECK SCHOOL OF MEDICINE
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
MASTER OF SCIENCE
APPLIED BIOSTATISTICS AND EPIDEMIOLOGY

August 2020

Copyright [2020] Irene Jiayao Chen

ii
Table of Contents
List of Tables……………………………………………………………………………………………...iii
List of Figures…….………………………………………………………………………………………iv
Abstract……………………………………………………………………………………………………v
Introduction……………………………………………………………………………………………….1
Methods…………………………………………………………………………………………………...2
Results……………………………………………………………………………………………………5
Discussion………………………………………………………………………………………………....7
References……………………………………………………………………………………………….30
Appendices……………………………………………………………………………………..31

iii
List of Tables
Table 1A. Number of Cancers Diagnosed at 15-39 years of Age among Females Contributing to
Three data Sources, at 20 Sites with Greatest Reported Incidence………………………………10

Table 1B. Number of Cancers Diagnosed at 15-39 years of Age among Males Contributing to
Three data Sources, at 20 Sites with Greatest Reported Incidence………………………………12

Table 2. Count of tumor sites per AYA Survivor in MEPs…………………………………………….13

Table 3A. Count (%) of Adolescents and Young Adults (AYAs) Cancers, by cancer site, age of
diagnosis, Female Only……………………………………………………………………………….14

Table 3B. Count (%) of Adolescents and Young Adults (AYAs) Cancers, by cancer site, age of
diagnosis, Male Only…………………………………………………………………………………….16

iv
List of Figures
Figure 1. Flowchart of Generating AYA Cohort in MEPs…………………………………………….18

Figure 2A. Pie Charts of Age Distribution of Adolescents and Young Adults (AYAs) Cancers, by
cancer site, Female Only………………………………………………………………………………..19

Figure 2B. Pie Charts of Age Distribution of Adolescents and Young Adults (AYAs) Cancers, by
cancer site, Male Only…………………………………………………………………………………..25

v
Abstract
Background: Relatively limited data resources are available to study Adolescent and Young
Adults (AYA) cancers.
Methods: We created an AYA cancer survivor cohort by identifying survivors (N=1,142) who
were 15 to 39 years of age at the time of their first cancer diagnosis, excluding diagnoses of
nonmelanoma skin cancers. We characterized the occurrence of incident cancers in the CDC
WONDER, prevalent cancers in the Cancer Today and AYA MEPS according to the absolute
number and relative frequency of primary cancers diagnosed at ages 15-39 years of age. We
compared the distribution of demographic features and cancer types between the three data
resources concerning relative frequency.
Results: We found an enormous distortion of the sex ratio of survivors, with female cancer
survivors overrepresented. Among females diagnosed in the AYA age range, there was a clear
overrepresentation of reproductive cancers, such as cervical, ovarian, and corpus uterus.
Conclusions: The numerous limitations of MEPS AYA cohort data, lack of representativeness,
inaccuracies in the diagnostic data, and readily anticipated based on methodology, emphasize
the need for a nationally representative data resource of AYA cancers.

1
Introduction
Adolescent and Young Adult (AYA) cancer defines any cancer that impacts individuals
age 15 to 39 at the time of diagnosis. According to the National Cancer Institute, an estimated
70,000 AYA individuals are diagnosed with cancer each year in the United States, which
accounts for 5 percent of the total proportion of cancers diagnosed ("Adolescents and Young
Adults (AYAs) with Cancer", 2018). AYA years are a challenging phase in life when young
individuals explore self-identity, develop important social relationships beyond the family of
origin, and prepare for the workforce (Dagnostino, Penney, & Zebrack, 2011). A diagnosis of
cancer and the following intensive treatment at this distinct stage of life can lead to
socioeconomic burden that differs from forms experienced by children or older adults following a
cancer diagnosis, and which may negatively affect quality of life (Landwehr, Watson,
Macpherson, Novak, & Johnson, 2016).
Scholarly recognition of the distinct health care needs and social and financial concerns
of AYA survivors (Guy, et al., 2014) has grown in recent years. Investigators have been drawn
to young adult cancer survivors due to large prospective cohorts like the Childhood Cancer
Survivor Study (CCSS) (Gibson, et al., 2018). Research questions regarding etiological features
of AYA cancer, clinical challenges experienced during diagnosis and treatment of AYA cancers,
and the comorbid conditions and late effects of cancer treatment experienced by AYA survivors
(Kaul, Fluchel, Spraker-Perlman, Parmeter, & Kirchhoff, 2016) have been proposed. Yet
researchers who wish to study these important topics are immediately challenged with limited
data resources available to study AYA cancers compared to those for cancers of childhood or
later adulthood.
A particularly noteworthy need for AYA cancer research is population-based cohort data.
Numerous large cohorts of older adults, pregnant women, and children have been carried out in
the U.S., Asia and Europe for decades. These resources provide data of great value to
understanding origins of cancer in these age groups, as well as disease outcomes, and the

2
long-term medical and social challenges that follow. However, little comparable data have been
collected at ages relevant to AYA cancers. In an effort to overcome this gap, researchers have
attempted to capture longitudinal data assembled for other purposes for use as research
cohorts. One source of data that is increasingly used in this way is the Medical Expenditure
Panel Surveys (MEPS), an annual survey of the civilian non-institutionalized population of the
USA conducted since 1996. However, the value of such data in answering questions about
AYA cancers depends in large part on how well data that have been assembled for a separate
original purpose capture the structure and information required to address important outstanding
questions about AYA cancers.
In this study, we created and sought to understand whether a cohort of AYA survivors
ages 15 to 39 at diagnosis contained within the full MEPS data resource would be
representative of AYA cancer patients in the United States. To accomplish this, we compared
demographic and clinical features of the MEPS AYA survivors to those of population-based sets
of incident and prevalent AYA cancer patients assembled in the United States, such as the CDC
Wide-ranging Online Data for Epidemiologic Research (CDC WONDER) database and the
CANCER TODAY project launched by World Health Organization.

Methods
Recognizing the appropriateness of incidence data for addressing etiologic questions
and prevalence data for estimating disease burden, we compared US population-based sets of
incident (CDC WONDER), and prevalent (CANCER TODAY) AYA primary cancers to the MEPS
AYA survivor cohort. The MEPS data structure precluded estimation of either incidence or
prevalence of AYA cancers, owing to the absence of requisite denominator data in this source.
We therefore compared relative numbers of AYA cancers in the incident, prevalent. and MEPS
survivor sets with respect to demographic features and cancer type.

3
We obtained study data from three different sources and harmonized them with respect
to available demographic features (sex of patient, three levels of age a diagnosis) and cancer
types represented in the MEPS. We selected incidence and prevalence data to correspond as
far as possible to MEPS data with respect to year of diagnosis. From each data source we
selected only cancers diagnosed between 15 and 39 years of age, included only cancers
reported as primary tumors, and excluded non-melanoma skin cancers.

MEPS AYA cohort
The Medical Expenditure Panel Surveys, an annual survey of the civilian non-
institutionalized population of the USA, has been conducted since 1996. The Household
Component (HC) of MEPs collected data from individual households selected from the prior
year’s participants in the National Health Interview Survey (NHIS) (Soni, 2019). MEPs
investigators conducted five in-person interviews with a single respondent from selected
households in two years. Interviews queried demographic and geographic information, medical
conditions, health status, health insurance, employment, utilization, and expenditure (Healthcare
Research). The survey data for all household members was reported by a single respondent in
the household and was supplemented by subsequent phone interviews with a subsample of
medical providers of survey participants.
We created and AYA survivor cohort within the MEPS data by appending full-year
consolidated data files from 2008 to 2012 MEPs, which contain data collection from several
rounds of panel annually. Among the 126,686 survey responders, 10,407 persons self-reported
that they or a household member had been told by a doctor that they had cancer of any kind in
the past. We identified survivors (N=1,142) who were 15 to 39 years of age at the time of their
first cancer diagnosis, excluding diagnoses of nonmelanoma skin cancers. For AYA survivors
for whom multiple malignancies were reported, we used data on tumors at each site for

4
analyses characterizing the cohort, and reported combinations of tumor sites reported for each
individual report combinations of sites.
We identified AYA cancer survivors cancer based on the reported the age of cancer
diagnosis. However, the question about the age of cancer diagnosis in MEPs was asked only on
surveys from 2008 to 2012, limiting survey years for which AYA cancers could be identified. In
an effort to maintain confidentiality, diagnoses at rare cancer sites were scored as “Other
cancer”. Criteria used to score a site as rare differed between survey years, with a frequency
count of fewer than four tumors in MEPS used from 2008 to 2011. In 2012, rare cancers were
those with a frequency count of fewer than 20 and those clinically rare cancers at any age
classified by National Health Institution (NIH): cancers of bone, esophagus, kidney, larynx, liver,
mouth, ovary, pancreas, rectum, stomach, testis, and uterus... Consequently 2012, the
diagnosis of testis cancer was coded “other cancer” , despite being the most common AYA
cancer in males.

Comparison groups
We obtained data on incident cancer diagnosed at AYA ages from the CDC Wide-
ranging Online Data for Epidemiologic Research (CDC WONDER) databases. CDC WONDER
provides cancer incidence data from selected statewide and metropolitan area cancer registries
that meet strict data quality criteria. Cancer case reports in this data set were produced by the
Center for Disease Control and Prevention (CDC) and the National Cancer Institute (NCI), and
verified by medical doctors ("United States Cancer Statistics: Incidence Public Information
Data"). Incidence data are available from 1999 to 2016 and can be accessed by year, state,
metropolitan area, age group, race, ethnicity, sex, and classification of cancer sites.
We obtained information on prevalent cancers diagnoses at AYA ages from CANCER
TODAY, a part of the project of the World Health Organization (WHO). The cancer cases were
collected from cancer registries in forty-six states in the United States ("Cancer today").

5
To harmonize data from the three sources in advance of comparison, we extracted
information on only diagnosed between 15 and 39. Because non-melanoma skin cancers were
not available in the MEPS AYA cohort, we excluded these cancer types from the analytic sets of
incident tumors, females (N=4,611) and males (N=4,039), and prevalent tumors, females
(N=3071) and males (N=2743).

Statistical analysis
We characterized occurrence of AYA cancers in the CDC WONDER, WHO and AYA
MEPS according to the absolute number and relative frequency of primary cancers diagnosed
at ages 15-39 years of age. We compared distribution of demographic features and cancer
types between the three data resources with respect to relative frequency. We limited more
detailed analyses to the most common AYA cancers, determined by identifying the 20 sites with
highest incidence among each of female and male participants in the CNC WONDER registry.
We estimated relative frequency as number of cancers at a specific site divided by number of
cancers at all sites, calculated separately for males and females, overall and further stratified by
age at diagnosis (15-19 years, 20-29 years, and 30-39 years). We extracted, managed and
analyzed data using SAS (Version 9.4). We used Excel (Version 16.31) to graphically display
relative number of tumors in each resource among males and females, overall, and according to
age at diagnosis.

Results
We identified a total of 1,624,168 invasive tumors diagnosed in participants between 15
and 39 years of age, 1,352,443 incident tumors in the CDC WONDER data, 270,586 prevalent
tumors in WHO data, and 1,239 among AYA MEPS survivors.
The sex distribution of tumors differed dramatically between in the MEPS cohort and
registry data. Among MEPS participants, cancer diagnosis reported at all sites by females

6
(N=1042) were 5.29 times more common than those reported by males (N=197) (Table 1A, 1B).
By contrast, incident AYA cancers at all sites were 1.5 times more common in females
(N=783,683) than males (N=500,776). Among prevalent cancers at all sites, those in females
(N=176,899) were 1.78 times as numerous as those in males (N=99,401).
Relative frequency of tumor type also differed substantially between MEPS participants
and those in the other series. Among cancers in females, for example, cervical cancer was
most common in MEPS participants, 37.4% of tumors, but the fifth most common incident and
fourth most common prevalent cancer, accounting for less than 10% of each. And while
cancers of the breast and thyroid were the two most common incident and prevalent cancers of
women, they ranked third and seventh, respectively among MEPS participants (Table 1A).
Among men, both incident and prevalent tumors were most commonly reported in testis, but this
site was found to rank third in MEPS data. MEPS methodology of scoring testicular cancers as
‘undefined’ in the years 2012 would account for part of this distinction. Accordingly, undefined
sites as a group were most common among males in MEPS, accounting for 23.4% of all tumors,
but rare or nonexistent in other series (Table 1B).
Among MEPS survivors who reported multiple malignancies (Table 2), we found that the
most common combination of tumors reported by female survivors was cervical and uterine;
seven of the 80 females reported this combination. We also found that two of 8 male survivors
reported cancers of the testis and at a site scored as “other”.
The distribution of ages at which participants were diagnosed with specific tumors also
tended to differ between MEPS participants and the other series. Among females diagnosed
with cervical cancer, for example, MEPS survivors more frequently reported the diagnosis
between 20 and 29 (45.4%), while only 21.4% of incident tumors, and 39.3% of prevalent
tumors were diagnosed at these ages. Similarly, among those diagnosed with cancer of the
corpus uteri, the largest group of MRPS survivors, 48.7%, were diagnosed between 20 and 29,
while only 21.4% of incident tumors and 10% of prevalent tumors were diagnosed at these

7
ages. Finally, most common ages of diagnosis of ovarian cancers were reported as 20-29
(53.4%) in MEPs. Yet, CDC data resource indicated 28.7%, and WHO showed 23% of the
diagnosis of ovarian tumors were between 20 and 29 (Table 3A).
Similarly, among males with testicular cancer, the majority of MEPS survivors, 61.6%,
were diagnosed at 30 to 39 years of age, while 48.4% of incident and 25% of prevalent
testicular tumors were diagnosed at these ages (Table 3B)

Discussion
Our study identified substantial differences between the MEPS AYA cohort and two
nationally representative sets of data, CDC WONDER incidence data and WHO CANCER
TODAY prevalence data, concerning the distribution of demographic features and cancer types.
Thus, we found that the MEPS cohort does not represent either incident or prevalent cancer
cases among AYA-aged cancer survivors in the United States. There is an enormous distortion
of the sex ratio of survivors, with female cancer survivors overrepresented. And within sex-
specific data we observed distortion of types of cancer represented, and distributions of age at
which specific cancers were diagnose. Among females diagnosed in the AYA age range, there
was clear overrepresentation of reproductive cancers, such as cervical, ovarian, and corpus
uterus.
Several limitations of the MEPS AYA cohort may preclude its use in most etiological
research. The small sample size in this cohort and even smaller numbers of individual cancer
may undermine statistical power. Moreover, recording some tumor types as “other cancer,”
prevents researchers from distinguishing between certain types of cancers of interest.
Additionally, since MEPS does not allow researchers to contact an individual participant, even
retrospective collection of risk factors and biospecimen data would not be possible. Given those
constraints, the MEPS cohort may not be considered as a reasonable data resource to conduct
etiological research.

8
By contrast, the AYA MEPS data have been used to study questions of survivorship. For
example, Avila et al. investigated whether female survivors diagnosed at AYA ages have a
higher likelihood of using cancer-screening service (Avila et al., 2016), compared to their
cancer-unaffected counterparts of similar age. These investigators found no difference in the
utilization of cancer-screening between those survivors and persons without a cancer history.
However, the lack of representativeness of the general population in this cohort may limit the
credibility of such a conclusion. In another study, Guy et al. investigated the economic burden
and lost productivity costs among persons surviving cancers at AYA ages (Guy et al., 2014).
These investigators concluded that those survivors suffer from excessive burden of medical
expenditures and lost productivity compared to people without a cancer diagnosis. However,
when investigators examined the financial impact of cancer diagnosis among those young
survivors, they did not indicate a distortion in the sex distribution of tumors reported in the
MEPS. We believed that non-representative participation in the cohort would undermine the
conclusion regarding the effects of medical expenditures and lost productivity in the general
population.
Further limitations in MEPs data arise from MEPs methodology. Certain types of data
were subject to inaccuracy; these include diagnosis, detailed event information, type of health
plan (Soni, 2019). Essential variables for the analysis of cancer subtypes, such as the stage of
cancer at diagnosis and cancer treatments, were not asked from the self-administrated
questionnaire. Additionally, Participants eligible to respond to the self-administered
questionnaire were required to be 18 years and older. Therefore, those persons with a cancer
diagnosis aged 15-17 were either excluded or their data were reported by a household member.
Some refinements that would improve the quality of MEP data can be envisioned. For
example, for AYA cancer reporting, definition of rare cancers could be based on the occurrence
of malignancies at AYA ages instead of all ages. Also, the diagnosis could be confirmed directly
by each cancer survivor. Investigators could also request permission to confirm the diagnosis in

9
the cancer registry corresponding to the residence of a person at the time of diagnosis.
However, even with those refinements, the MEPS data would still be limited by the retrospective
data collection, small numbers of AYA cancer cases, and participation bias within survivors.
It seems unlikely that MEPS AYA data could be of significant valuable etiological
research or for survivorship research, which requires representative data. The numerous
shortcomings of MEPS AYA cohort data – lack of representativeness shown in this research,
together with inaccuracies documented by others and readily anticipated based on methodology
-- underscore the need for a nationally representative data resource of individuals at risk of AYA
cancer.

10
Table 1A. Number of Cancers Diagnosed at 15-39 years of Age among Females
Contributing to Three data Sources, at 20 Sites with Greatest Reported Incidence
Incidence
a
Prevalence
b
MEPs
c
Site Order Count % Order Count % Order Count
2
%
Breast 1 213,115 26.3%
2
38,160 21.6%
3 120 11.5%
Thyroid 2 142,619 17.6%
1
51,821 29.3%
7 39 3.7%
Melanoma
of the Skin* 3 80,365 9.9%
5
12,933 7.3%
6 59 5.7%
Lymphoma
l
4 63,786 7.9%
3
14,421 8.2%
8 28 2.7%
Cervix Uteri 5 60,211 7.4%
4
14,390 8.1%
1 388 37.2%
Colon and
Rectum 6 32,732 4.0%

6 6,268 3.5%

9

17
f

1.6%
Corpus
Uteri 7 26,851 3.3%

10 2,942 1.7%

4

119

11.4%
Ovary 8 25,481 3.1%
9
5,046 2.9%
5 73 7.0%
Leukemias 9 24,832 3.1%
7
5,952 3.4%
14 4 0.4%
Brain 10 22,592 2.8%
8
5,312 3.0%
13 5 0.5%
Kidney and
Renal Pelvis 11 14,533 1.8%

11 2,848 1.6%

11
g

7

0.7%
Soft Tissue
including
Heart

12 13,061 1.6%

--

--

--

12

6
h

0.6%
Lung and
Bronchus 13 11,611 1.4%

13 891 0.5%

14

4

0.4%
Oral Cavity
and
Pharynx 14 11,222 1.4%

12

1,197
1
0.7%

17

3
j

0.3%
Bones and
Joints 15 6,699 0.8%

--

--

--

10

11

1.1%
Stomach 16 5,843 0.7%
17
630 0.4%
14 4 0.4%
Pancreas 17 4,082 0.5%
18
611 0.3%
-- 0 --
Vulva 18 3,841 0.5%
15
729 0.4%
-- --
Urinary
Bladder,
invasive and
in situ 19 3,811 0.5%

16 679 0.4%

18

1

0.1%
Small
Intestine 20 2,226 0.28%

-- -- --

--

--

--
Other

-- 38,993 4.9% --
1.6%
-- 5
k
0.5%
Unspecified
d
-- -- -- --
1,195 0.7%
2 149 14.3%
Total
e
-- 805,706 100% -- 173,828 100% -- 1,042 100%
*
Non-melanoma skin cancers CDC WONDER (N=4,611) and from WHO (N=3,071) were
excluded and categorized as other cancers to be compatible with the MEPs AYA cohort
a
Data are from selected statewide and metropolitan area cancer registries, 1999-2016, United
States of America, ages 15-39, CDC WONDER
b
Data are estimated number of prevalent cases in 2018 within a 5-year period, United States
of America, ages 15-39, World Health Organization
c
Data are collected from MEPs, 2008-2012, United States of America, ages 15-39

11
d
In MEPs, other cancer includes those cancer diagnosis variables with a frequency count of
fewer than 4 from 2008 to 2011. Since 2012, those cancer diagnosis variables with a
frequency count of fewer than 20 were recorded as other cancer for confidential reasons.
e
Total count includes all invasive cancer sites combined and in situ breast cancers
f
MEPs categorized colon and rectum cancers separately
g
MEPs reported kidney cancer only
h
MEPs reported soft tissue, muscle, or fat cancers
j
MEPs reported throat
k
Blood, larynx, liver
l
Lymphoma include both Hodgkin lymphoma and Non-Hodgkin lymphoma
1
Lip and oral cavity
2
Count was measured at each tumor site

12

Table 1B. Number of Cancers Diagnosed at 15-39 years of Age among Males
Contributing to Three data Sources, at 20 Sites with Greatest Reported Incidence
Incidence
a
Prevalence
b
MEPs
c
Site Order Count % Order Count % Order Count
2
%
Testis 1 97,766 19.5%
1
21,756 21.9%
3 26 13.2%
Lymphomas 2 81,026 16.2%
2
18,594 18.7%
4 25 12.7%
Melanoma of
the Skin 3 46,516 9.3%
6
5,794 5.8%
2 28 14.2%
Leukemias 4 34,039 6.8%
4
7,257 7.3%
8 8 4.0%
Colon and
Rectum 5 34,033 6.8%
7
5,069 5.1%
6 11 5.6%
Brain 6 29,948 6.0%
5
6,924 7.0%
6 11 5.6%
Thyroid 7 29,834 6.0%
3
11,476 11.5%
5 12 6.1%
Kidney and
Renal Pelvis 8 19,587 3.9%

8 3,320 3.3%

11

3

1.5%
Soft Tissue
including
Heart 9 15,650 3.1%
-- -- -- -- -- --
Miscellaneous 10 12,986 2.6% -- -- -- -- -- --
Lung and
Bronchus 11 10,849 2.2%

10 1,112 1.1%

10

4

2.0%
Bones and
Joints 12 9,764 1.9%
-- -- -- 9 5 2.5%
Urinary
Bladder,
invasive and
in situ 13 8,588 1.7%

11

888

0.9%

11

3

1.5%
Kaposi
Sarcoma 14 7,687 1.5%

9 1,363 1.4%

--

--

--
Stomach 15 6,297 1.3%
13
503 0.5%
13 2 1.0%
Tongue 16 4,035 0.8% -- -- -- -- -- --
Pancreas 17 3,994 0.8%
15
253 0.3%
-- -- --
Liver 18 3,867 0.8%
14
274 0.3%
14 0 --
Myeloma 19 2,939 0.6% -- -- -- -- -- --
Salivary
Gland 20 2,875 0.6%

12 611 0.6%
-- -- --
Other
d
-- 38,496 7.7% -- -- -- -- 13 6.6%
Unspecified -- -- -- -- 7,705 7.8% 1 46 23.4%
Total -- 546,737
100%
--
96,658 100.0%
-- 197 100%
*
Non-melanoma skin cancers CDC WONDER (N=4,039) and from WHO (N=2,743) were
excluded and categorized as other cancers to be compatible with the MEPs AYA cohort
a
Data are from selected statewide and metropolitan area cancer registries, 1999-2016, United
States of America, ages 15-39, CDC WONDER
b
Data are estimated number of prevalent cases in 2018 within a 5-year period, United States
of America, ages 15-39, CANCER TODAY
c
Data are collected by Medical Expenditure Panel Surveys (MEPs), 2008-2012, United States
of America, ages 15-39

13
d
In MEPs, other cancer includes those cancer diagnosis variables with a frequency count of
fewer than 4 from 2008 to 2011. Since 2012, those cancer diagnosis variables with a
frequency count of fewer than 20 were recorded as other cancer for confidential reasons.
2
Count was measured at each tumor site

Table 2. Count of tumor sites per AYA Survivor in MEPs
# of tumor sites Female (N=950) Male (N=189)
1 870 181
2 68
a
8
b
3 12 0
a
Seven females were diagnosed with the combination of cancers at cervix and uterus sites
b
Two males were diagnosed with the combination of cancers at testis and “other” sites

14

Table 3A. Count (%) of Adolescents and Young Adults (AYAs) Cancers, by cancer site,
age of diagnosis, Female Only
Incidence
a
Prevalence
b
MEPs
c
Age of
diagnosis
15-19 20-29 30-39 15-19 20-29 30-39 15-19 20-29 30-39
Breast*
335
0.2%
20,959
9.8%
191,811
90.0%
59
0.2%
3,576
9.4%
34,525
90.5%
4
3.3%
30
25.0%
86
71.7%
Thyroid
7,434
5.2%
45,674
32.0%
89,511
62.8%
3,224
6.2%
16,755
32.3%
31,842
61.4%
4
10.3
16
41.0%
19
48.7%
Melanom
a of the
Skin*
3,082
3.8%
26,799
33.3%
50,484
62.8%
236
1.8%
3,712
28.7%
8,985
69.5%
9
15.3%
13
22.0%
37
62.7%
Lympho
ma
j
8,430
13.2
%
25,076
39.3%
30,280
47.5%
1,410
9.8%
5,429
37.6%
7,582
52.6%
2
7.1%
12
42.9%
14
50.0%
Cervix
Uteri
309
0.5%
12,911
21.4%
46,991
78.0%
60
0.4%
5,662
39.3%
8,668
60.2%
60
5.5%
176
45.4%
152
39.2%
Colon
and
Rectum
f

928
2.8%
6,413
19.6%
25,391
77.6%
300
4.8%
1,297
20.7%
4,671
74.5%
0
0.0%
5
31.3%
11
68.8%
Corpus
Uteri
103
0.4%
3,682
13.7%
23,066
85.9%
6
0.2%
295
10.0%
2,641
89.8%
10
8.4%
58
48.7%
51
42.9%
Ovary
2,439
9.6%
7,325
28.7%
15,717
61.7%
257
5.1%
1,162
23.0%
3,627
71.9%
6
8.2%
39
53.4%
28
38.4%
Leukemia
s
4,256
17.1
%
8,398
33.8%
12,178
49.0%
1,262
21.2%
2,179
36.6%
2,511
42.2%
2
40.0%
0
0%
3
60.0%
Brain
3,477
15.4
%
8,099
35.8%
11,016
48.8%
944
17.8%
1,938
36.5%
2,430
45.7%
2
40.0%
0
0%
3
60.0%
Kidney
and
Renal
Pelvis
g
403
2.8%
2,768
19.0%
11,362
78.2%
89
3.1%
373
13.1%
2,386
83.8%
0
0%
3
42.9%
4
57.1%
Soft
Tissue
including
Heart
h
1,960
15.0
%
4,598
35.2%
6,503
49.8%
--
--
--
--
--
--
1
16.7%
3
50.0%
2
33.3%

15
Lung and
Bronchus
246
2.1%
1,688
14.5%
9,677
83.3%
40
4.5%
390
43.8%
461
51.7%
0
0%
3
75.0%
1
25.0%
Oral
Cavity
and
Pharynx
853
7.6%
3,099
27.6%
7,270
64.8%
119
9.9%
254
21.2%
824
68.8%
0

0 0
Bones
and
Joints
2,053
30.6%
2,450
36.6%
2,196
32.8%
--
--
--
--
--
--
2
18.2%
7
63.6%
2
18.2%
Stomach
120
2.1%
1,124
19.2%
4,599
78.7%
16
2.5%
138
21.9%
476
75.6%
0 2
50.0%
2
50.0%
Pancreas
174
4.3%
841
20.6%
3,067
75.1%
63
10.3%
313
51.2%
235
38.5%
0 0 0
Vulva
74
1.9%
619
16.1%
3,148
82.0%
26
3.6%
122
16.7%
581
79.7%
--
--
--
--
--
--
Urinary
Bladder,
invasive
and in
situ
137
3.6%
796
20.9%
2,878
75.5%
17
2.5%
118
17.4%
544
80.1%
0

1
100%
0
Small
Intestine
37
1.7%
427
19.2%
1,762
79.2%
--
--
--
--
--
--
--
--
--
--
--
--
Other

1637
7.0%
5,898
25.2%
15,897
67.8%
1,064
11.8%
2,833
32.0%
5,051
56.1%
--
--
--
--
--
--
Unspecifi
ed
d

845
6.6%
3,406
26.7%
8,510
66.7%
--
--
--
--
--
--
12
8.1%
67
45.0%
70
47.0%
Total
e
39,633
4.9%
192,95
0
23.9%
573,31
4
71.1%
9,192
5.3%
46,596
26.8%
118,040
67.9%
114
11.0%
435
41.1%
485
46.9%
*
Includes female breast cancer and in situ breast cancers
a
Data are from selected statewide and metropolitan area cancer registries, 1999-2016, United
States of America, ages 15-39, CDC WONDER
b
Data are estimated number of prevalent cases in 2018 within a 5-year period, United States of
America, ages 15-39, World Health Organization
c
Data are collected from MEPs, 2008-2012, United States of America, ages 15-39
d
In MEPs, other cancer includes those cancer diagnosis variables with a frequency count of
fewer than 4 from 2008 to 2011. Since 2012, those cancer diagnosis variables with a frequency
count of fewer than 20 were recorded as other cancer for confidential reasons.
e
Total count includes all invasive cancer sites combined and in situ breast cancers
f
MEPs categorized colon and rectum cancers separately
g
MEPs reported kidney cancer only
h
MEPs reported soft tissue, muscle, or fat cancers
j
Lymphoma include both Hodgkin lymphoma and Non-Hodgkin lymphoma

16
Table 3B. Count (%) of Adolescents and Young Adults (AYAs) Cancers, by cancer site, age
of diagnosis, Male Only
Incidence
a
Prevalence
b
MEPs
c
Age of
diagnosis
15-19 20-29 30-39 15-19 20-29 30-39 15-19 20-29 30-39
Testis
6,899
7.1%
43,592
44.6%
47,275
48.4%
2,496
9.2%
17,856
65.8%
6,783
25.0%
5
19.2%
5
19.2%
16
61.6%
Lympho
mas
10,491
12.9%
29,197
36.0%
41,338
51.0%
676
2.5%
15,113
55.9%
11,261
41.6%
6
24.0%
10
40.0%
9
36.0%
Melanom
a of the
Skin
1,952
4.2%
12,328
26.5%
32,236
69.3%
280
2.2%
2,995
24.0%
9,208
73.8%
3
10.7%
6
21.4%
19
67.9%
Leukemia
s

6,956
20.4%
11,657
34.2%
15,426
45.3%
2,925
19.3%
5,422
35.8%
6,783
44.8%
3
37.5%
1
12.5%
4
50.0%
Colon
and
Rectum
803
2.4%
6441
18.9%
26,789
78.7%
304
2.8%
1,978
18.5%
8,393
78.6%
0
0%
5
42.0%
7
58.0%
Brain
4,388
14.7%
10,486
35.0%
15,074
50.3%
2,477
31.9%
5,286
68.1%

--
4
36.4%
1
9.1%
6
54.5%
Thyroid
1,484
5.0%
8,750
29.3%
19,600
65.7%
676
2.7%
8,005
32.3%
16,107
65.0%
2
16.7%
6
50.0%
4
33.3%
Kidney
and
Renal
Pelvis
358
1.8%
2,928
14.9%
16,302
83.2%
164
2.4%
755
10.9%
6,038
86.8%
0 0 3
100%
Soft
Tissue
including
Heart
2,363
15.1%
5,495
35.1%
7,792
49.8% -- -- --
-- -- --
Miscellan
eous
1,004
7.7%
3,462
26.7%
8,520
65.5% -- -- --
-- -- --

17
Lung and
Bronchus
288
2.7%
1,627
15.0%
8,934
82.3% -- -- --
0 2
50.0%
2
50.0%
Bones
and
Joints
3,595
36.8%
3,483
35.7%
2,686
27.5% -- -- --
4
80.0%
1
20.0%
0
0%
Urinary
Bladder,
invasive
and in
situ
229
2.7%
1,601
18.6%
6,758
78.7%
164
8.2%
755
38.0%
1,070
53.8%
0
0%
1
33.3%
2
66.7%
Kaposi
Sarcoma
41
0.5%
1,972
25.7%
5,674
73.8% -- -- --
-- -- --
Stomach
97
1.5%
1167
18.5%
5,033
79.9% -- -- --
0
0%
1
50.0%
1
50.0%
Tongue
65
1.6%
873
21.6%
3,097
76.8% -- -- --

--

--

--
Pancreas
82
2.1%
542
13.6%
3,370
84.4% -- -- --

--

--

--
Liver
261
6.7%
945
24.4%
2,661
68.8%

--

--

--

--

--

--
Myeloma
22
0.7%
319
10.9%
2,598
88.4%

--

--

--

--

--

--
Salivery
Gland
311
10.8
849
29.5
1,715
59.7

--

--

--

--

--

--
Other

2,768
7.2%
8,929
23.3%
26,599
69.5%

--

--

--
2
16.7%
5
41.7%
5
41.7%
Unspecifi
ed
d

-- -- -- -- -- -- 5
10.9%
15
32.6%
26
56.6%
Total
e
44,457
1.0%
156,64
2
34.0%
299,47
7
65.0%

-- -- --
34
17.3%
59
29.9%
104
52.8%
a
Data are from selected statewide and metropolitan area cancer registries, 1999-2016, United
States of America, ages 15-39, CDC WONDER
b
Data are estimated number of prevalent cases in 2018 within a 5-year period, United States
of America, ages 15-39, CANCER TODAY
c
Data are collected by Medical Expenditure Panel Surveys (MEPs), 2008-2012, United States
of America, ages 15-39
d
In MEPs, other cancer includes those cancer diagnosis variables with a frequency count of
fewer than 4 from 2008 to 2011. Since 2012, those cancer diagnosis variables with a
frequency count of fewer than 20 were recorded as other cancer for confidential reasons.

18
Figure 1. Flowchart of Generating AYA Cohort in MEPs

19
Figure 2A. Pie Charts of Age Distribution of Adolescents and Young Adults (AYAs) Cancers, by
cancer site, Female Only
CDC WONDER WHO MEPs

Breast*

Thyroid

Melanoma
of the Skin

Lymphoma

0.2%
9.8%
90.0
%
0.2%
9.4%
90.4
%
3.3%
25.0
%
71.7
%
5.2%
32.0
%
62.8
%
6.2%
32.3
%
61.5
%
10.3
%
41.0
%
48.7
%
3.8%
33.3
%
62.9
%
1.8%
28.7
%
69.5
%
15.3
%
22.0
%
62.7
%
13.2
%
39.3
%
47.5
%
9.8%
37.6
%
52.6
%
7.1%
42.9
%
50.0
%

20
Cervix Uteri

Colon and
Rectum

Corpus
Uteri

Ovary

0.5%
21.4
%
78.1
%
0.4%
39.3
%
60.3
%
5.5%
45.4
%
39.2
%
2.8%
19.6
%
77.6
%
4.8%
20.7
%
74.5
%
31.3
%
68.7
%
0.4%
13.7
%
85.9
%
0.2%
10.0
%
89.8
%
8.4%
48.7
%
42.9
%
9.6%
28.7
%
61.7
%
5.1%
23.0
%
71.9
%
8.2%
53.4
%
38.4
%

21
Leukemias

Brain

Kidney and
Renal Pelvis

Soft Tissue
including
Heart

--

17.1
%
33.8
%
49.0
%
21.2
%
36.6
%
42.2
%
40.0
%
60.0
%
15.4
%
35.8
%
48.8
%
17.8
%
36.5
%
45.7
%
16.7
%
50.0
%
33.3
%
2.8%
19.0
%
78.2
%
3.1%
13.1
%
83.8
%
42.9
%
57.1
%
15.0
%
35.2
%
49.8
%
16.7
%
50.0
%
33.3
%

22
Lung and
Bronchus

Oral Cavity
and
Pharynx

--
Bones and
Joints

--

Stomach

2.1%
14.5
%
83.4
%
4.5%
43.8
%
51.7
%
75.0
%
25.0
%
7.6%
27.6
%
64.8
%
9.9%
21.2
%
68.9
%
30.6
%
36.6
%
32.8
%
18.2
%
63.6
%
18.2
%
2.1%
19.2
%
78.7
%
2.5%
21.9
%
75.6
%
50.0
%
33.3
%

23
Pancreas

--
Vulva

--
Urinary
Bladder,
invasive and
in situ

Small
Intestine

--

--
4.3%
20.6
%
75.1
%
10.3
%
51.2
%
38.5
%
1.9%
16.1
%
82.0
%
3.6%
16.7
%
79.7
%
3.6%
20.9
%
75.5
%
2.5%
17.4
%
80.1
% 100.0
%
1.7%
19.2
%
79.1
%

24
Other

--
Unspecified
d

--

Total
e

Legend:

7.0%
25.2
%
67.8
%
11.8
%
32.0
%
56.2
%
6.6%
26.7
%
66.7
%
8.1%
45.0
%
47.0
%
4.9%
23.9
%
71.2
%
5.3%
26.8
%
67.9
%
11.1
%
41.5
%
47.4
%

25
Figure 2B. Pie Charts of Age Distribution of Adolescents and Young Adults (AYAs) Cancers, by
cancer site, Male Only
CDC WONDER WHO MEPs
Testis

Lymphomas

Melanoma of
the Skin

Leukemias

7.1%
44.6
%
48.4
%
9.2%
65.8
%
25.0
%
19.2
%
19.2
%
61.6
%
12.9
%
36.0
%
51.1
%
2.5%
55.9
%
41.6
%
24.0
%
40.0
%
36.0
%
4.2%
26.5
%
69.3
%
2.2%
24.0
%
73.8
%
10.7
%
21.4
%
67.9
%
20.4
%
34.2
%
45.3
%
19.3
%
35.8
%
44.8
%
0.0%
42.0
%
58.0
%

26
Colon and
Rectum

Brain

Thyroid

Kidney and
Renal Pelvis

--
Soft Tissue
including
Heart

--

--
2.4%
18.9
%
78.7
%
2.8%
18.5
%
78.7
%
42.0
%
58.0
%
14.7
%
35.0
%
50.3
%
31.9
%
68.1
%
36.4
%
9.1%
54.5
%
5.0%
29.3
%
65.7
%
2.7%
32.3
%
65.0
%
0.0%
33.3
%
66.7
%
1.8%
14.9
%
83.3
%
2.4%
10.9
%
86.7
%
15.1
%
35.1
%
49.8
%

27
Miscellaneous

--

--
Lung and
Bronchus

--

Bones and
Joints

--

Urinary
Bladder,
invasive and
in situ

Kaposi
Sarcoma

--

--
15.1
%
35.1
%
49.8
%
2.7%
15.0
%
82.3
%
33.3
%
66.7
%
36.8
%
35.7
%
27.5
%
80.0
%
20.0
%
2.7%
18.6
%
78.7
%
8.2%
38.0
%
53.8
%
33.3
%
66.7
%
0.5%
25.7
%
73.8
%

28
Stomach

--

Tongue

--

--
Pancreas

--

--
Liver

--

--
Myeloma

--

--
1.5%
18.5
%
80.0
%
33.3
%
66.7
%
1.6%
21.6
%
76.8
%
2.1%
13.6
%
84.3
%
6.7%
24.4
%
68.9
%
0.7%
10.9
%
88.4
%

29
Salivery
Gland

--

--
Other

--

Unspecified
d
-- --

Total
e

--

Legend:

10.8
%
29.5
%
59.7
%
7.2%
23.3
%
69.5
%
16.7
%
41.7
%
41.7
%
10.9
%
32.6
%
56.5
%
1.0%
34.0
%
65.0
%
17.3
%
29.9
%
52.8
%

30
References

Soni, A. (2019, Oct 24). Medical Expenditure Panel Survey (MEPS) Overview [PowerPoint
Slides]. Agency for Healthcare Research and Quality.

Healthcare Research. (n.d.). Retrieved from
https://www.meps.ahrq.gov/mepsweb/about_meps/survey_back.jsp

Dagostino, N. M., Penney, A., & Zebrack, B. (2011). Providing developmentally appropriate
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Richardson, L. C. (2014, June). Estimating the health and economic burden of cancer
among those diagnosed as adolescents and young adults. Retrieved from
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Kaul, S., Fluchel, M., Spraker-Perlman, H., Parmeter, C. F., & Kirchhoff, A. C. (2016, June 21).
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experiences-of-long-term-survivors-of-adolescent-and-

United States Cancer Statistics: Incidence Public Information Data. (n.d.). Retrieved from
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31
Appendices

Appendix 1A. List of individual cancers contributing to the other sites designated
“Other”, CDC WONDER, Female
Site Count
Tongue 2,902
Rectosigmoid Junction 2,666
Liver and Intrahepatic Bile Duct 2,627
Other Endocrine including Thymus 2,466
Cecum 2,362
Small Intestine 2,226
Liver 2,142
Ascending Colon 1,996
Myeloma 1,964
Large Intestine, NOS 1,446
Uterus, NOS 1,282
Nasopharynx 1,267
Nose, Nasal Cavity and Middle Ear 1,143
Larynx 917
Aleukemic, Subleukemic and NOS 807
Hodgkin - Extranodal 779
Vagina 760
Splenic Flexure 699
Hepatic Flexure 612
Tonsil 592
Peritoneum, Omentum and Mesentery 587
Other Biliary 575
Esophagus 527
Gallbladder 484
Mesothelioma 480
Kaposi Sarcoma 376
Trachea, Mediastinum and Other Respiratory
Organs 314
Lip 290
Other Digestive Organs 278
Floor of Mouth 176
Oropharynx 96
Hypopharynx 96
Other Oral Cavity and Pharynx 85
Other Urinary Organs 60
Ureter 47
Pleura 32

Appendix 1B. List of individual cancers contributing to the other sites designated
“Other”, CDC WONDER, Male
Site Count
Nasopharynx 2,577
Small Intestine 2,342
Cranial Nerves Other Nervous System 2,342

32
Trachea, Mediastinum and Other Respiratory
Organs 2,287
Esophagus 2,143
Prostate 2,096
Anus, Anal Canal and Anorectum 2,083
Gum and Other Mouth 1,629
Tonsil 1,606
Nose, Nasal Cavity and Middle Ear 1,601
Larynx 1,560
Chronic Lymphocytic Leukemia 1,255
Other Lymphocytic Leukemia 1,092
Lip 979
Hepatic Flexure 917
Splenic Flexure 814
Hodgkin - Extranodal 793
Other Biliary 740
Penis 730
Acute Monocytic Leukemia 713
Other Acute Leukemia 689
Other Myeloid/Monocytic Leukemia 542
Intrahepatic Bile Duct 523
Other Male Genital Organs 366
Other Digestive Organs 312
Floor of Mouth 290
Gallbladder 247
Peritoneum, Omentum and Mesentery 241
Oropharynx 236
Other Oral Cavity and Pharynx 164
Hypopharynx 159
Other Urinary Organs 110
Ureter 73
Pleura 68

Appendix 2A. List of individual cancers contributing to the other sites designated
“Other”, WHO, Female
Site Count
Non-melanoma skin cancer 2743
Nasopharynx 428
Multiplemyeloma 342
Liver 332
Oropharynx 200
Larynx 175
Vagina 163
Gallbladder 130
Kaposisarcoma 65
Mesothelioma 40
Oesophagus 33

33
Hypopharynx 12

Appendix 2B. List of individual cancers contributing to the other sites designated
“Other”, WHO, Male
Site Count
Non-melanoma skin cancer 2,743
Lip,oralcavity 1,452
Nasopharynx 622
Oropharynx 390
Multiplemyeloma 310
Larynx 255
Prostate 226
Oesophagus 177
Gallbladder 139
Penis 131
Mesothelioma 39
Hypopharynx 18

Abstract (if available)

Abstract Relatively limited data resources are available to study Adolescent and Young Adults (AYA) cancers. We created an AYA cancer survivor cohort by identifying survivors (N=1,142) who were 15 to 39 years of age at the time of their first cancer diagnosis, excluding diagnoses of nonmelanoma skin cancers. We characterized the occurrence of incident cancers in the CDC WONDER, prevalent cancers in the Cancer Today and AYA MEPS according to the absolute number and relative frequency of primary cancers diagnosed at ages 15-39 years of age. We compared the distribution of demographic features and cancer types between the three data resources concerning relative frequency. We found an enormous distortion of the sex ratio of survivors, with female cancer survivors overrepresented. Among females diagnosed in the AYA age range, there was a clear overrepresentation of reproductive cancers, such as cervical, ovarian, and corpus uterus. The numerous limitations of MEPS AYA cohort data, lack of representativeness, inaccuracies in the diagnostic data, and readily anticipated based on methodology, emphasize the need for a nationally representative data resource of AYA cancers.

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University of Southern California Dissertations and Theses

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Asset Metadata

Creator Chen, Irene Jiayao (author)

Core Title A comparison of three different sources of data in assessing the adolescent and young adults cancer survivors

School Keck School of Medicine

Degree Master of Science

Degree Program Applied Biostatistics and Epidemiology

Publication Date 08/08/2020

Defense Date 08/07/2020

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag adolescent and young adult cancers,diagnostic data,limitations,OAI-PMH Harvest

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Cortessis, Victoria (committee chair), Farias, Albert (committee member), Miller, Kimberly (committee member)

Creator Email jiayaoch@usc.edu

Permanent Link (DOI) https://doi.org/10.25549/usctheses-c89-362839

Unique identifier UC11666287

Identifier etd-ChenIreneJ-8901.pdf (filename),usctheses-c89-362839 (legacy record id)

Legacy Identifier etd-ChenIreneJ-8901.pdf

Dmrecord 362839

Document Type Thesis

Rights Chen, Irene Jiayao

Type texts

Source University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

Access Conditions The author retains rights to his/her dissertation, thesis or other graduate work according to U.S. copyright law. Electronic access is being provided by the USC Libraries in agreement with the a...

Repository Name University of Southern California Digital Library

Repository Location USC Digital Library, University of Southern California, University Park Campus MC 2810, 3434 South Grand Avenue, 2nd Floor, Los Angeles, California 90089-2810, USA