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Evaluation of the current state of management of children with central nervous system tumors in Paraguay through a comprehensive needs assessment
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Content
EVALUATION OF THE CURRENT STATE OF MANAGEMENT OF CHILDREN WITH CENTRAL
NERVOUS SYSTEM TUMORS IN PARAGUAY THROUGH A COMPREHENSIVE NEEDS ASSESSMENT
by
Jacquelyn Baskin
A Thesis Presented to the
FACULTY OF THE USC GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
MASTER OF SCIENCE
(CLINICAL AND BIOMEDICAL INVESTIGATIONS)
May 2011
Copyright 2011 Jacquelyn Baskin
ii
Acknowledgements
First and foremost I would like to thank Dr. Jonathan Finlay for his support and
mentorship in this project as well as the supporting members of my thesis committee, Dr. Louise
Rohrbach and Dr. Stanley Azen, for their continued guidance. I would also like to acknowledge
the Division of Hematology-Oncology at the Children’s Hospital of Los Angeles for the support
they have provided for the completion of this project as well as my pursuit of the Masters of
Science degree in Clinical and Biomedical Investigation. I would like to acknowledge my
supporting mentors from St Jude Children’s Research Hospital, Dr. Scott Howard, Dr. Ibrahim
Qaddoumi, and Dr. Miguela Caniza. I would like to express my gratitude to our colleagues in
Paraguay for their hard work and without whom this work would not be possible, Dr. Eva
Lezcano, Dr. Angelica Samudio, Dr. Bo-Sung Kim, and Dr. Diego Figueredo. Lastly, I would like to
thank our expert reviewers that have agreed to review the quantitative questionnaire in an
effort to complete validation of this tool, Dr. Ibrahim Qaddoumi, Dr. Eric Bouffet, Dr. Luis
Madero, Dr. Blanca Diez, and Dr. Stewart Kellie.
iii
Table of Contents
Acknowledgements ii
List of Tables iv
List of Figures v
Abstract vi
Chapter 1: Goals and Objectives 1
Chapter 2: Background 3
Pediatric Cancer in Low-Income Countries 3
Demographics in Paraguay 3
Advances in Pediatric Oncology in Low-Income Countries 7
Current Progress in Paraguay 8
Preliminary Data Regarding Pediatric Brain Tumors in Paraguay 9
Chapter 3: Methods 15
Site Visits 15
Key Informant Interviews 16
Development and Implementation of a Quantitative Questionnaire 16
Chapter 4: Results 22
Site Visits 22
Key Informant Interviews 24
Quantitative Needs Assessment Questionnaire 26
Chapter 5: Discussion 33
Available Resources 33
Common versus Individual Deficiencies 33
Potential Interventions 37
Strategies Implemented to Date 39
Chapter 6: Conclusions 41
Chapter 7: Future Plans 42
Validation of Quantitative Needs Assessment Questionnaire 42
Next Steps in Paraguay 43
Global Utilization of Quantitative Survey 46
Bibliography 48
Appendix: Needs Assessment Questionnaire: Pediatric Brain Tumors 52
iv
List of Tables
Table 1: Socioeconomic factors of Paraguay compared with Latin America: 5
Table 2: Socioeconomic factors of Paraguay compared with the United States 6
Table 3: Treatment and complications in management at two hospitals in Paraguay 11
Table 4: Causes and rates of treatment failure at two hospitals in Paraguay 13
Table 5: Overall scores for resource assessment at two hospitals 14
Table 6: Epidemiology results of the quantitative questionnaire on available 27
resources
Table 7: Neurosurgery results of the quantitative questionnaire on available 28
resources
Table 8: Pathology results of the quantitative questionnaire on available resources 28
Table 9: Radiology results of the quantitative questionnaire on available resources 29
Table 10: Radiation Oncology results of the quantitative questionnaire on available 30
resources
Table 11: Supportive Care results of the quantitative questionnaire on available 31
resources
Table 12: Scales utilized for relevance, clarity, simplicity, and ambiguity 42
v
List of Figures
Figure 1: Map of Paraguay 4
Figure 2: Improvements in event-free survival (EFS) in childhood leukemia in 8
a pediatric oncology program in Recife, Brazil
Figure 3: Childhood cancer network and satellite clinic locations 9
Figure 4: Events evaluated at two hospitals in Paraguay 11
Figure 5: Surgical resection outcomes at two hospitals in Paraguay 13
Figure 6: Map of the Central American region 47
vi
Abstract
Background: Advances in pediatric cancer care which have improved outcomes in high-income
countries have not reached the 80% of children with cancer who live in low-income countries.
Efforts have been made to improve care for children with leukemia (the commonest childhood
cancer) in low-income countries, but there has been virtually no focus on children with brain
tumors (the second commonest childhood cancer). This study focused on Paraguay, a low-
middle income country in South America. Only approximately 50% of the expected cases are
diagnosed each year and of those, only 50% survive more than a few months after diagnosis. For
children with central nervous system (CNS) tumors, preliminary data from two hospitals in
Paraguay demonstrate that the number of children diagnosed with brain cancer is less than 50%
of what is expected for the population based on global statistics. Patients that are referred for
treatment have high morbidity and mortality. The goal of this study was to comprehensively
evaluate the current state of care for children with brain tumors in Paraguay, which will then
allow for the development of targeted interventions.
Methods: To identify deficiencies in resources that would be amenable to targeted
interventions, we evaluated access to care and outcomes in children diagnosed with brain
tumors at three hospitals in Asunción, Paraguay: two public hospitals, for patients without
health insurance, and one social security hospital for patients with government health
insurance.
vii
Three methods were utilized:
1. Site Visits:
Three site visits were performed between June 2009 and August 2010 to evaluate the
treatment facilities. The medical team visited the three participating tertiary care
centers in Asunción and one satellite clinic, associated with one of the public hospitals,
in Ciudad del Este, an under-developed area in the country’s Eastern region.
2. Interviews with Health Care Workers:
Interviews with health care workers from relevant disciplines in the three tertiary care
centers were performed to determine their perceptions regarding available resources
and deficiencies.
3. Quantitative Needs Assessment:
A questionnaire to evaluate the key components of a brain tumor program was
developed and administered to pediatric oncologists from the three participating
facilities. A list of medications based on the WHO 2009 list of essential medications was
incorporated into the questionnaire to determine their availability.
Results: All three tertiary facilities have access to chemotherapy and pediatric oncologists, but
lack training and tools for neuropathology and optimal neurosurgery. The two public hospitals
also lack access to appropriate neuroradiological tests and timely radiotherapy, with additional
deficiencies in critical care and family support services identified at one of these facilities. These
results demonstrate significant disparity even within Asunción, the capital city of Paraguay, with
different rates of treatment failure (ranging from 37% to 83% among the three facilities),
defined as abandonment of therapy, relapse, and death.
viii
Discussion and Conclusions:
These results demonstrate common as well as discrete deficiencies in resources available for the
management of children with brain tumors in three treatment facilities in Paraguay. The
significant disparity within the capital city of Paraguay may reflect the different levels of
governmental and philanthropic support, extent of program development, and socio-economic
status of patients and families. These disparities translate into different rates of treatment
failure. Causes of failure included abandonment of therapy, relapse and death from toxicity and
appear to be associated with lack of resources and support. These findings will aid in the
development of targeted strategies to improve early diagnosis and optimal therapy. Supportive
measures already in place include local multidisciplinary teams, online conferences,
standardized treatment guidelines, and the first Spanish language International Pediatric Neuro-
oncology symposium held in August 2010. If effective, these strategies will serve as a model for
the development of pediatric brain tumor programs in similar low-income settings.
1
Chapter one: Goals and Objectives
Primary Aim
Our primary objective was to determine the current state of management of children with
pediatric brain tumors in Paraguay by elucidating the availability as well as lack of resources in
the various disciplines required to care for these patients. It was hypothesized that deficiencies
exist specific to Paraguay that are affecting appropriate management as well as patient
outcomes. To define and prioritize these needs, a comprehensive assessment was performed
through the use of a validated needs assessment tool, site visits and personnel interviews. A
quantitative evaluation serves to assess resources within key areas vital to the management of
children with brain tumors. Detailed information regarding available resources will aid in the
development of appropriate interventions to optimize early diagnosis and treatment.
Secondary Aims
One of the secondary aims of this project was to develop methods to optimize diagnosis and
treatment of children with brain tumors in Paraguay through improved usage of available
resources, collaboration, education, and standardization of care. We intend to develop a
strategic plan based on the results of this needs assessment and additional data that will be
obtained from a retrospective review on the incidence and risk factors for treatment failure in
this population.
Additionally, we aim to develop tools that can be utilized more globally. As we have been
proceeding with these efforts in Paraguay, colleagues have been collaborating with physicians in
2
Central America to improve care for children with CNS tumors. Various socioeconomic factors
demonstrated in the countries in this region are similar to those in Paraguay (Table 1).
Therefore, it is felt that the medical centers that participate in AHOPCA (Asociación de Hemato-
oncologia Pediátrica de Centro América) would benefit from an evaluation utilizing this needs
assessment tool to aide in their efforts to identify deficiencies and develop targeted strategies
to improve care. The needs assessment tool could also be implemented amongst centers in
high-income countries, such as the United States and Canada, to provide a comparison to these
centers in order to objectively elucidate various disparities in access to care.
Lastly, efforts have been initiated to develop global guidelines for the development and
maintenance of a pediatric brain tumor program. One aspect that was deemed to be vital was
the determination of guidelines regarding minimal requirements to initiate a local pediatric
brain tumor program based on available resources, as opposed to palliation alone when there
are insufficient resources for appropriate management. This needs assessment tool could be
utilized as a means to evaluate if a pediatric oncology center meets the criteria set forth in those
guidelines for the development of such a program.
3
Chapter Two: Background
Pediatric Cancer in Low-Income Countries
Pediatric cancer is the leading cause of disease-related mortality in most high-income countries
and is becoming increasingly important in low-income countries due to continuing
improvements in public health. As other previously devastating pediatric illnesses like infections,
malnutrition, and diarrhea have declined following widespread institution of vaccination
programs, nutritional education, and oral rehydration programs, pediatric cancer has emerged
as a leading cause of death in children in many low- and middle- income countries, such as India,
Malaysia, Thailand and parts of Latin America (Wagner HP et al., 1997; Barr R et al., 2006). The
80% cure rate for children with cancer in high-income countries does not apply to the 80% of
pediatric patients who live in low-income countries with limited access to care (Wagner HP et
al., 1997). Pediatric CNS tumors in particular - which represent the second most common type
of childhood cancer - are difficult to manage due to under-diagnosis, incorrect clinical
assessment, and lack of availability of appropriate radiological, neurosurgical, and
radiotherapeutic services (Barr et al., 2006).
Demographics in Paraguay
After a preliminary review, it was decided to pursue further collaboration with Paraguay (Figure
1) to develop one of the first pediatric brain tumor programs in a low- income country, and
create a model that could be utilized in similar settings with limited resources throughout Latin
America. What makes Paraguay unique is that it is a geographically small country with easy
accessibility via well paved roads, providing the necessary infrastructure to successfully establish
4
national programs such as a blood banking network, and initiate the development of a
childhood cancer network. It is projected that results will be translatable to various Central and
South American countries given that there are many similarities in the economy, age
distribution and size of the population, as well as various health indicators (Tables 1). The
implication of these similarities is that tools proven to be successful in Paraguay may be useful
as a model for these countries as well (World Bank, GNI per capita; World Bank, population ages
0-14; World Bank, country and lending groups; World Bank, pediatric mortality rates 2011). One
should note that although there are more drastic differences between Paraguay and some of
the South American countries regarding these indicators, there are similar regions within each
country as a result of wide distribution of the socioeconomic status amongst the populations.
These methods will require initial testing for applicability and feasibility prior to implementation
in other low-income settings.
Figure 1: Map of Paraguay
5
Table 1: Socioeconomic Factors of Paraguay compared with Latin America:
Central America
Paraguay Honduras Guatemala El Salvador Costa Rica Panama
Gross National
Income
$4,660 $3,730 $4,590 $6,360 $10,940 $12,530
World Bank Rank
(income level)
Low-
middle
Low-
middle
Low-
middle
Low-middle Upper-
middle
Upper-
middle
Population
(millions)
7
7.5
14
6.1 4.6 3.5
Pediatric
Population
(< 14 years old)
34% 37% 42% 32% 26% 29%
Pediatric
Mortality
(< 5 years old)
23 per
1000
30 per
1000
40 per
1000
17 per 1000 11 per 1000 23 per 1000
South America
Paraguay Peru Bolivia Ecuador Chile Argentina Brazil
Gross National
Income
$4,660 $8,120 $4,250 $8,100 $13,440 $14,090 $10,200
World Bank Rank
(income level)
Low-
middle
Upper-
middle
Low-
middle
Low-
middle
Upper-
middle
Upper-
middle
Upper-
middle
Population
(millions)
7
29 9.9 13.6 17 40
194
Pediatric
Population
(< 14 years old)
34% 30% 36% 31% 23% 25% 26%
Pediatric
Mortality
(< 5 years old)
23 per
1000
19 per
1000
40 per
1000
20 per
1000
7 per
1000
13 per
1000
17 per
1000
6
Paraguay is a low-middle income country with a gross national income per capita of $4,660,
about one tenth of that of the United States, and a population of 7 million people,
approximately 40% of whom are less than 14 years old (Table 2) (World Bank, GNI per capita;
World Bank, population ages 0-14; World Bank country and lending groups; Globalis Paraguay;
CIA world fact book – Paraguay, 2011). The leading cause of mortality in children nationwide is
trauma, followed by cancer, except in rural areas where infections continue to be the second
most common cause of death (Pan American Health Organization – Paraguay health profile
2011). Approximately 300 cases of pediatric cancer, representing only 50% of the approximately
600 expected cases, are diagnosed each year in Paraguay. Of those diagnosed, only 50% survive
more than a few months after diagnosis (UICC: Establishment of a Childhood Cancer Network
2011; Burton A, 2009).
Table 2: Socioeconomic Factors of Paraguay compared with the United States
Paraguay United States
Gross National Income per capita $4,660 $46,730
World Bank Rank Low-middle income country High-income country
Population 7 million 300 million
Pediatric population
(< 14 years old)
34% 20%
Pediatric mortality (< 5 years old) 23/1000 live births 8/1000 live births
Pediatric mortality rank 106 151
There are many obstacles to treatment of pediatric cancer in low-income countries like
Paraguay, including delayed diagnosis, treatment-related morbidity and mortality, and
abandonment of treatment. Delayed diagnosis is often secondary to a lack of families’
awareness of the medical care available, resources for travel to medical centers, or health care
workers’ knowledge regarding the diagnosis, treatability or availability of specialized services.
Abandonment of treatment occurs with rates between 8% and 42% in various Latin America
7
countries (Aurora RS et al., 2007) and is often due to a poor socio-economic environment,
increased travel time to the treatment center, or a lack of understanding of the patient’s
condition and need for treatment (Aurora RS et al., 2007; Metzger ML et al., 2003). In some
areas, rates of abandonment have decreased due to standardized care, locally adapted
protocols, and local financial support (Aurora RS et al., 2007).
Advances in Pediatric Cancer in Low-Income Countries
Through implementation of needs assessment, professional training, standard diagnostic and
therapeutic protocols, increased local financial support, and partnerships with high-income
countries, outcomes in children with acute leukemia have improved in many low-income
countries (Antillon F et al., 2005; Wilimas JA & Ribeiro RC 2001). A review of 375 children
diagnosed with acute leukemia at a pediatric oncology program in Recife, Brazil, has
demonstrated that as patient and family support, hospital facilities, personnel and treatment
availability, as well as supportive care improved, abandonment decreased from 16% to less than
1% and event-free survival at five years increased from 32% to 65% (Figure 2) (Howard SC et al.,
2004). Advances in pediatric cancer in low-income countries have focused mainly on the
management of acute leukemia, the most common childhood cancer for which the treatment
requirements include only chemotherapy and adequate supportive care. Even though CNS
tumors are the second most common cause of childhood cancer with a high mortality rate, only
recently have efforts been initiated to improve their management in low-income countries
(Qaddoumi et al., 2008).
8
Figure 2: Improvements in EFS in Childhood Leukemia in a Pediatric Oncology Program in
Recife, Brazil:
Current Progress in Paraguay
Some steps have already been taken to improve care in Paraguay for children with cancer,
particularly acute leukemia, through the ReNACI program (Red Nacional de Atención de Cáncer
Infantil). This program was initiated by the Centro Materno Infantil (CMI), a public hospital in
Asuncion, and is supported by a Union for International Cancer Control (UICC) grant as part of
the “My child matters” program (UICC – Establishment of a Childhood Cancer Network 2011;
Burton A, 2009). Programmatic goals are to improve early detection, access to care, and
treatment of children with cancer through the establishment of five regional medical centers
(Figure 3). The objectives are to develop local capacity to address basic health needs for children
with cancer, create early diagnosis and referral centers, and improve follow up through
programs that increase education and awareness (UICC – Establishment of a Childhood Cancer
Network 2011; Burton A, 2009).
9
Figure 3: Childhood Cancer Network and Satellite Clinic Locations:
Preliminary Data Regarding Pediatric Brain Tumors in Paraguay
The three hospitals participating in this project are the Instituto de Prevision Social (IPS), Centro
Materno Infantil (CMI), and the Instituto Nacional de Cancer (INC). IPS is a social security facility
that cares for patients that are covered by governmental health insurance and frequently have
increased access to medical care. CMI and INC are public hospitals that care for children that
have no form of medical insurance and often have poor access to health care. With regard to
children with CNS tumors, according to a preliminary review of 64 cases from two of these
hospitals, one public (INC) and one social security hospital (IPS), over a three year period, the
number of children in Paraguay diagnosed with CNS cancer is less than 50% of that which should
be expected for the population based on global statistics (SEER data – CNS and Miscellaneous
Intracranial and Intraspinal Neoplasms 2011). Furthermore, CNS tumors were the third most
common pediatric malignancy, after leukemia and sarcomas, a trend seen in other low-income
countries as well that is contrary to the literature in which CNS tumors are the second most
10
common malignancy in children (Bonilla et al., 2009; SEER data – CNS and Miscellaneous
Intracranial and Intraspinal Neoplasms 2011).
Multi-national data suggest that this variation
likely results from underestimation of the true incidence secondary to lack of or improper
diagnosis or documentation (Howard SC et al., 2008).
The 64 cases were reviewed, 23 from IPS and 41 cases from INC. Patient ages ranged up to15
years old with 66% male and 34% female. At INC, medulloblastoma was the most common
tumor (n=9), followed by brain stem tumors (n=8), pilocytic astrocytomas (n=6), and
ependymoma and anaplastic astrocytoma (n=4). At IPS, craniophayngioma (n=6), was the most
common tumor followed by medulloblastoma, pilocytic astrocytoma, and anaplastic
astrocytoma (4 each). The 19 other brain tumors seen at the two institutions included: CNS
germ cell tumors, glioblastoma multiforme, low-grade and anaplastic oligodendroglioma,
choroid plexus papilloma and carcinoma, ependymoblastoma, diffuse fibrillary astrocytoma, and
atypical teratoid rhabdoid tumor.
Those children with CNS cancer that are referred to treatment centers have a high incidence of
poor surgical outcomes, infectious complications, abandonment, and mortality. As can be seen
in Table 3, a larger percentage of tumors were considered unresectable at INC, the public
hospital; furthermore, only 9-10% of patients from either of the medical centers underwent
gross total resections. These low rates of radical surgical resection of CNS tumors substantially
affect patient outcomes, since studies have uniformly demonstrated that the extent of surgical
resection greatly impacts survival (Wisoff JH et al., 1998; Duffner PK et al., 1998; Finlay JL and
Wisoff JH, 1999). Additionally, it was found that all patients with a ventriculo-peritoneal shunt
11
(n=11) from either institution suffered from some type of complications, which likely represents
a deficiency in available supportive care services.
Table 3: Treatment and Complications in Management at Two Hospitals in Paraguay:
Surgery IPS n=23 (%) INC n=41 (%)
Gross total resection 2 (9%) 4 (10%)
Partial resection 19 (82%) 22 (54%)
Biopsy 1 (4%) 2 (5%)
Unresectable 1 (4%) 13 (32%)
Ventriculo-peritoneal shunt 4 (17%) 7 (17%)
Complications Infection 3 (75%) 6 (86%)
Dysfunction 1 (25%) 1 (14%)
Chemotherapy alone 1 (4%) 3 (7%)
Radiation therapy alone 0 8 (20%)
Chemotherapy and Radiation therapy 13 (56%) 19 (46%)
No treatment 9 (39%) 11 (27%)
Figure 4: Surgical Resection Outcomes at Two Hospitals in Paraguay:
IPS
(Social Security)
Gross Total Resection (9%)
Partial Resection (82%)
Biopsy (4.5%)
Not Resectable (4.5%)
INC
(Public)
Gross Total Resection (10%)
Partial Resection (53%)
Biopsy (5%)
Not resectable (32%)
12
Preliminary investigation into the rates of treatment failure, defined as abandonment, relapse
or death, after 3 years at three participating facilities demonstrated high rates in all groups and
ranging from 37% to 83%. This demonstrates the gravity of the situation for patients in
Paraguay considering that it is likely that patients with treatment failure will eventually die from
their disease, translating into mortality rates of 37% to 83%. These rates are significantly higher
than the 25% 5-year mortality rate demonstrated in children with CNS cancer in high-income
countries, such as the United States (SEER registry data; Cancer Incidence and U.S. Death Rates
2011). Data from two facilities are presented in Table 4.
As demonstrated in other low-income countries, these disparities in outcomes, particularly in
rates of abandonment, are more drastic for children treated at public facilities where patients
are usually from a lower socio-economic class (Aurora RS et al., 2007; Metzger ML et al., 2003;
Bonilla M et al., 2009; Gupta S et al., 2009). Paraguayan data illustrate this disparity, with rates
of abandonment significantly higher in the public facility than at the social security hospital (59%
versus 4%) (Table 4, Figure 4). However, such variations in rates of abandonment may also
reflect the different levels of governmental and philanthropic support and extent of program
development at the two types of hospitals.
13
Figure 5: Events Evaluated at Two Hospitals in Paraguay:
IPS
(Social Security)
Abandonment (4%)
Remission (57%)
Relapse (13%)
Death (26%)
INC
(Public)
Abandonment (59%)
Remission (17%)
Relapse (2%)
Death (22%)
Table 4: Causes and Rates of Treatment Failure at Two Hospitals in Paraguay
IPS n=23 (%) INC n=41 (%)
Abandonment 1 (4%) 24 (59%)
Remission 13 (57%) 7 (17%)
Relapse 3 (13%) 1 (2%)
Mortality 6 (26%) 9 (22%)
Preliminary information was collected regarding available resources for appropriate
management of children with brain tumors as well. Based on clinical experience, it was
determined that there are seven factors that highly impact patient care, including radiology,
neurosurgery, radiation therapy, intensive care facilities, supportive care, neuropathology and
chemotherapy. Each factor was evaluated based on qualitative and quantitative characteristics,
such as the presence of essential equipment, quality of equipment, experience and training of
specialists providing care, and accessibility by patients. A numerical score was assigned to each
component based on availability of services and overall scores calculated for each component.
14
These scores were compared to an optimal score that represented the desired number and
quality of resources. As demonstrated in Table 5, lack of optimal resources was demonstrated
at both facilities, with a greater disadvantage with regard to access to optimal care seen in the
public hospital (INC). It appears that the level of treatment failure may correlate with the level
of resources available in that the public hospital (INC) has an increased level of treatment
failure, particularly secondary to abandonment, which may be exacerbated by lack of resources
and appropriate infrastructure. However, a more extensive needs assessment evaluation and
formal investigations into the prevalence of treatment failure and associated risk factors in
children with brain tumors in Paraguay is required to further delineate this relationship and
inform the development of appropriate interventions.
Table 5: Overall Scores for Resource Assessment at Two Hospitals in Paraguay:
IPS INC Optimal
Imaging 6 2 6
Pediatric neurosurgery 3 0 3
Radiation therapy 3 2 3
Pediatric Intensive Care Unit 3 0 3
Supportive Care 7 4 10
Neuropathology 0 0 2
Chemotherapy 3 3 3
15
Chapter Three: Methods
Site Visits
A collaborative partnership was developed between pediatric oncologists from Paraguay and
the Neural Tumors Program at the Children’s Hospital Los Angeles (CHLA). An initial site visit
was performed in June 2009 to strengthen the relationship, perform an on-site evaluation of the
facilities available, and create a more formal partnership to develop a pediatric brain tumor
program. Since 2009, three site visits have been performed to evaluate the treatment facilities
as part of a comprehensive needs assessment evaluation of available resources. Members of
the CHLA medical team (two pediatric oncologists and a pediatric oncology nurse) have visited
three participating tertiary care centers in Asunción, the capital city of Paraguay, and one
satellite clinic in Ciudad del Este, an under-developed area in the country’s Eastern region. The
three participating hospitals are the Instituto de Prevision Social (IPS), Centro Materno Infantil
(CMI), and the Instituto Nacional de Cancer (INC). IPS is a social security facility that cares for
patients that are covered by governmental health insurance and frequently have increased
access to medical care. CMI and INC are public hospitals that care for children that have no
form of medical insurance and often have poor access to health care. During these visits, the
CHLA medical team toured the facilities, met the faculty and administration, and gave lectures
on various issues relating to management of pediatric brain tumors.
16
Key Informant Interviews
During the initial site visit, key participants from the relevant disciplines involved in the
management of children with CNS malignancies were identified. Key informants from pediatric
oncology, radiology, pathology, radiation oncology, nursing, palliative care, and neurosurgery
were identified and invited to participate in these interviews. Subsequently, during the second
site visit, interviews were arranged with these selected individuals to gain additional
information regarding the status of care for children with CNS tumors. The interviews were
semi-structured with two primary open-ended questions. Each participant was asked to
comment both on the overall status of the care provided to children in their facility as well as on
specific obstacles they encountered at their institution within their particular discipline. These
data were gathered as written notations and then analyzed in conjunction with the other results
from the comprehensive needs assessment.
Development and Implementation of a Quantitative Needs Assessment Questionnaire
The first step in the development of the quantitative needs assessment questionnaire was to
identify the key components of a pediatric brain tumor program. Literature supports the
utilization of a multidisciplinary team for improved comprehensive care.
26,27
The disciplines
considered essential to the optimal management of these patients include pediatric oncology,
neurosurgery, neuroradiology, neuropathology, radiation oncology, nursing, and supportive care
services such rehabilitation services, infectious disease specialists, and psychosocial support.
Literature addressing pediatric oncology in general and brain tumors in particular has addressed
the importance of each of these factors in patient outcomes (Grisold W et al., 2006; Messing-
Junger AM et al., 2000).
17
Pediatric oncology is the ‘cornerstone’ of the care of children with CNS tumors. Pediatric
oncologists are often the leaders of the multidisciplinary team required for optimal care, and
their training encompasses all aspects of management for these patients. Chemotherapy has
been demonstrated to be a vital part of treatment of pediatric brain tumors (Gottardo NG and
Gajjar A. 2008; Packer R.J. 2008; Pollack I.F. 2009)
Neurosurgery is also an essential component to care for children with brain tumors (Nejat F. et
al. 2008). According to the literature, the extent of surgical resection has a profound impact on
patient outcomes, with gross total resection of various tumors associated with improved
prognosis (Wisoff JH et al., 1998; Duffner et al., 1998; Finlay JL and Wisoff JH, 1999). The ability
to perform maximal surgical resection with minimal neurologic and neuropsychiatric damage
depends on the neurosurgeon’s experience and training, availability of the appropriate facilities
as well as necessary equipment, and supportive peri- and post-operative care.
Neuroradiology has also been shown to be an essential part of optimal care (Panigrahy A. and
Blumi S. 2009; Vezina L.G. 2008). The appropriate imaging test is vital to extract the necessary
information. For instance, magnetic resonance imaging (MRI) of the brain is used not only to
identify the potential diagnosis but to guide the neurosurgical process, leading to optimal
resection. Some issues that can be elucidated include possible diagnosis, location of the tumor,
and appropriate management based on the risks and benefits of surgery versus other
treatments. For example, one could differentiate between an exophytic brain stem glioma
versus diffuse intrinsic pontine glioma, which would have drastically different ramifications with
regard to both treatment and outcome.
18
As one could imagine, the ability to correctly identify the type of tumor based on
neuropathology is also essential to appropriate management (Pfister S. et al. 2009). For
example, both ependymoma and medulloblastoma are posterior fossa tumors; however, the
optimal treatment is substantially different. Therefore, the ability to differentiate these two
pathologies would be necessary for optimal outcomes. The questions developed for this section
focused on availability, experience, and training of the pathologist and availability of supporting
techniques, such as essential immunohistochemical stains.
Radiation oncology is also an essential component to optimal care and is considered standard of
care for many types of pediatric brain tumors (Hoffman K.E. 2009). Although effective, there is
also a high risk of permanent and severe sequelae associated with this type of therapy. The
provision of safe and efficacious radiation therapy requires appropriate equipment for
simulation that is utilized for therapy planning as well as therapy administration, well trained
staff, including a radiation oncologist, dosimetrist, and therapist, and quality assurance
measures (Barton et al., 2006). Therefore, the questions for this section focused on experience
and training of the physicians and staff in the planning and administration of the therapy, the
availability and quality of the equipment utilized, and timing of initiation and completion of
therapy as this may affect outcomes as well.
Supportive care is another aspect of therapy that may be as important as those listed above.
Infectious complications are a major cause of morbidity and mortality in this patient population
in low-income countries, therefore assessing the availability of an infection control program and
19
various essential medications is necessary (Gupta S et al., 2009; Gao YL et al., 2006; Marwaha RK
et al., 2010). Nursing is also a vital component to care, even more so in many low-income
countries since many have limited or no access to physicians overnight, and the nursing staff are
the first line of care in medical emergencies. As a result of the potential neurologic
complications that are associated with the tumor, surgery, and subsequent therapy,
rehabilitation services such as physical therapy, occupational therapy and speech therapy are
also a necessary component to care for this patient population.
Lastly, it was deemed important to address the psychosocial component. In low-income
countries, socio-economic status has an enormous impact on the ability of patients and their
families to seek and follow up with care. For example, one situation that is seen commonly in
low-income countries, but not experienced in many high-income countries is the problem of
abandonment of therapy, where a patient begins treatment but at some point is lost to follow-
up prior to the completion of appropriate therapy. This has been shown to be due to a variety
of psychosocial factors, including low socio-economic status, distance to the treating medical
center, and low levels of education (Aurora RS et al., 2007; Metzger ML et al., 2003; Bonilla M et
al., 2009; Mostert S et al., 2006). For these reasons, one must carefully assess these issues, such
as housing, food, transportation, and temporary employment, when evaluating resources
necessary for optimal patient care.
Medication availability is also a critical component of the medical treatment of these children. A
list of essential medications, including anti-cancer chemotherapy, antimicrobials, anti-seizure
drugs, anti-emetics (to manage nausea and emesis), and other supportive care medications, was
20
developed based on the diagnosis and the WHO list of essential medications updated in 2009
(WHO List of Essential Medications 2010).
Once the list of appropriate topics was completed, a series of relevant questions was developed
to evaluate the available resources in each of these areas. The goal of this process was two-fold.
First, we hoped to gather necessary yet relevant information to demonstrate both the
availability and lack of resources associated with the program under investigation. Secondly, we
wanted to develop a questionnaire that would be easy to comprehend, feasible to complete in a
short period of time, and would request information that was easily accessible. We developed a
series of closed-ended questions to collect the desired data, with a few open-ended questions
to obtain any additional information.
Once the questionnaire was complete, it underwent preliminary review amongst various experts
prior to initial implementation. Reviewers included two physicians with experience in pediatric
CNS tumors in low-income countries, one pediatric oncologist and one infectious disease
physician with experience in childhood cancer care in low-income countries, and one faculty
member from the Preventive Medicine Department at USC with additional expertise in the
development of needs assessment surveys.
After the recommended revisions were performed, a completed questionnaire (see Appendix)
underwent preliminary implementation amongst physicians in the target community in
Paraguay as a pilot program. The survey was administered via email while the administering
physician was available via email and online meetings for additional questions. Information was
21
collected on the three facilities discussed above. There was collaboration amongst the
physicians from each facility to complete one questionnaire for each facility. Once completed,
the questionnaire was then emailed back to the administering physician for review.
22
Chapter Four: Results
Site Visits
The medical team from CHLA visited all three participating facilities as well as a satellite clinic in
Ciudad de Este, an under-developed region in the Eastern part of the country.
IPS is a social security hospital with more resources available to care for their patients than the
public hospitals. There is a pediatric oncology unit within the pediatric ward that is staffed by
four hemato-oncologists. Some of the pediatric oncology beds are within a larger shared room,
and three rooms are semi-private with two beds in each room separated by a physical divider.
There is a day hospital with up to six chairs available for infusions. The clinic is shared with the
adult oncologists and consists of one consultation room and one conference room. They have
radiology services, including MRI and computed axial tomography (CAT) scan imaging available
within the facility. However, radiation therapy is not provided within the hospital. These
services are performed at an outside private facility that is contracted through the hospital.
Patient information is recorded on paper medical charts that are well organized and easily
located.
CMI is a public hospital that is part of the University of Asunción Medical School. Pediatric
cancer patients are managed in a newly renovated center that has a separate 16-bed pediatric
oncology unit with a combination of 4-bed and 2-bed rooms and one isolation room, all staffed
by four pediatric hemato-oncologists and two pediatric fellows. Adjacent to the unit is the
nursing station and medication preparation area. An outpatient clinic has one office and an
23
infusion center that can accommodate up to 15 patients. Radiological services are available in
the hospital, although services do not include MRI imaging, which is performed at an outside
facility. Radiation oncology is also not available at the hospital and must be performed at the
other public facility or contracted through a nearby private facility.
Paper medical charts are utilized, although an electronic database has been implemented for
which there is one full-time data manager to input and verify patient information. Extensive
psychosocial support services are provided, including transportation for families that live far
from the medical center, housing for family members at one of the two available housing
facilities, meals, and temporary employment for those who require it. Additionally, in order to
decrease infectious complications, latrines and cement flooring are being provided for those
lacking these facilities in their homes. A system has also been developed to identify patients
that may be at high risk for abandonment, such as patients with multiple family members living
in the home or of extremely low socio-economic status or educational level, and additional
home visits are undertaken in an attempt to decrease rates of abandonment of therapy.
INC is another public facility that serves only adults and children with oncologic illnesses and is
located in a neighborhood outside the central area of Asunción. There is a separate 10-bed
pediatric unit that is staffed by two full-time oncologists. There is one consultation office and a
small infusion center, but no pharmacy currently within the hospital. Funding from a foundation
supplies the chemotherapy medications but families must travel to Asunción to obtain many of
the other necessary medications. Radiologic services are available, but MRI scanning is not
available to their patients while at the hospital. Radiation oncology services are available within
24
the hospital, but there is only one cobalt machine and one linear accelerator for all adult and
pediatric patients. They also have access to family housing, although this is shared between the
adult and pediatric patients.
During the second site visit, we had the opportunity to travel to Cuidad de Este to evaluate the
satellite clinic that was initiated as part of the development of a national pediatric cancer
network. This clinic covers a catchment area of approximately 23 clinics who refer patients to
this center for further evaluation and management of potential malignancies. There is a
consultation office that is staffed by a pediatric oncologist and a small infusion center is under
development. Diagnostic procedures for hematologic malignancies are performed at the clinic
while all others are sent to CMI in Asunción for further evaluation. Those patients diagnosed
with a malignancy are referred to CMI for initial management, although the satellite clinic is
increasing the services to be provided internally. Patients requiring admission for therapy-
related complications will be admitted to the adjoining hospital in Ciudad de Este, unless their
level of severity is such that the local hospital cannot meet their medical care needs, at which
point the patient will be transferred to CMI for further management.
Key Informant Interviews
We interviewed 12 physicians from various disciplines: two pediatric oncologists from IPS, one
of whom is also on staff at INC, and two pediatric oncologists from CMI, one radiologist from
IPS, two neurosurgeons, one of whom operates at both CMI and IPS, two pathologists that work
at INC and IPS, and one adult palliative care physician who sees patients at IPS and INC. From
the oncologists, the general sentiment was that experience in pediatric oncology and
25
appropriate medications, particularly chemotherapy, were resources available to their patients.
What appeared to be lacking was experience and training in some of the supportive services
and, most importantly, communication with the other members of the treating medical team.
Additionally, it was felt that there was a lack of awareness regarding the diagnosis and
appropriate treatment in the surrounding communities. For example, a common situation
described is a patient that presents with a brain mass and undergoes surgical resection, but is
then discharged from care or sent directly to the radiation therapist without consultation with a
pediatric oncologist.
With regard to pathology, one of the major obstacles encountered is the lack of access to
immunohistochemical stains to assist in diagnosis. These special stains are not publicly available
since there is no local laboratory distributer established in Paraguay. Some of the pathologists
may obtain samples while abroad and utilize them sparingly on their return, but they are not
universally available at any of the facilities. Additionally, the pathologists discussed their lack in
specialized training in neuropathology and how it may limit their ability to make optimal
diagnostic decisions on the more challenging cases.
The neurosurgeons we interviewed reported that they have adequate training. Two have
additional pediatric training, but they lack equipment and have difficulty with optimal post-
operative care. One of the barriers discussed by the palliative care physician is the lack of
pediatric services. She was trained in adult medicine, but consults on pediatric patients as
needed since these services would otherwise not be available.
26
Quantitative Needs Assessment Questionnaires
Amongst the three facilities surveyed, there are 10 to 20 children diagnosed with a CNS at each
hospital each year, with slightly higher rates seen at the public hospitals. At one of the public
hospitals and the social security hospital, the majority of patients present with local disease.
However, one of the public hospitals noted that half of their patients present with disseminated
disease, which may be a reflection of delayed diagnosis.
All three hospitals have pediatric oncologists on staff to manage children with CNS tumors. One
facility has a pediatric hematology/oncology physician present 24 hours each day, while the
social security hospital has a pediatric resident available at the hospital and a specialist available
by telephone. One of the public hospitals does not have 24 hour physician coverage (Table 6);
their in-patients are covered by licensed nursing staff overnight. When asked about
chemotherapy medications, all three facilities reported access to the majority of chemotherapy
medications necessary to treat their patients and almost all patients are treated according to an
established protocol.
The survey also asked the physicians to report patient outcomes. When asked about relapse
rates, two centers reported that few of their patients with CNS tumors have relapsed over the
last few years, while one of the public facilities reported that the majority of their patients
relapsed. In regard to abandonment at the three centers, the social security hospital and one of
the public hospitals reported a low rate of abandonment while the other public hospital
reported a high rate of abandonment amongst their patients (Table 6).
27
Table 6. Epidemiology results of the quantitative questionnaire on available resources:
Social Security Public Hospital #1 Public Hospital #2
Patients per year 10-15 15-20 13-16
Pediatric oncologists Yes Yes Yes
Essential medications Yes Yes Yes
Patients that present with
metastatic disease
Few Few Half
Overnight physician coverage Pediatric
resident
None Pediatric Hematologist
-Oncologist
Patients that relapse per year Few Majority Few
Patients that abandon
therapy per year
Few Half Few
As a way to evaluate delays in therapy, the length of time between presentation and initial
surgical assessment, as well as initiation of therapy with either chemotherapy or radiation
therapy was assessed. At IPS and CMI, approximately one to two weeks elapsed between arrival
to the facility and the initial surgical resection or diagnostic biopsy. At INC, as will be discussed
in detail below, the facilities do not exist to perform neurosurgery, and patients receive all their
surgical care at an outside hospital. For this reason, this parameter of care could not be
assessed for INC. With regard to therapy, it was reported at both IPS and CMI that either
chemotherapy or radiation therapy could be initiated within one month while at INC this
process may take up to three months.
As mentioned above, INC does not have the facilities for neurosurgery. Their patients undergo
surgical management at Hospital Nacional and are subsequently sent to INC for adjuvant
therapy. Both IPS and CMI have neurosurgeons available, two of whom have additional
pediatric subspecialty training. The majority of patients will receive their surgical care within
28
the facility, and the appropriate devices such as ventriculo-peritoneal shunts and external
ventricular devices, are also available when needed (Table 7).
Table 7: Neurosurgery results of the quantitative questionnaire on available resources:
Social Security Public Hospital #1 Public Hospital #2
Neurosurgery available in the
hospital
Yes No Yes
Pediatric neurosurgeons Sometimes No Sometimes
Number of surgical resections
per year
11-20 N/A 11-20
Devices available?
(ventriculo-peritoneal shunt and
external ventricular device)
Yes N/A Yes
All three hospitals have trained pathologists as part of the medical team; however, none of
them have additional subspecialty training in neuropathology. Additionally, none of these
facilities has access to diagnostic immunohistochemical stains, such as synaptophysin, glial
fibrillary acidic protein, or proliferative markers (mib-1/ki-67), to aid in accurate diagnosis. Both
CMI and IPS are able to perform cytospin on cerebrospinal fluid samples to evaluate the
presence of malignancy, while INC must send samples for these tests to an outside facility for
evaluation (Table 8).
Table 8: Pathology results of the quantitative questionnaire on available resources:
Social Security Public Hospital #1 Public Hospital #2
Number of Pathologists 5 3 5
Number of Neuropathologists 0 0 0
Are special immunohistochemical
stains available
No No No
Is Cytospin available in the
hospital
Yes No Yes
29
In terms of accessibility to radiologic tests, IPS has all the equipment necessary, including CAT
and MRI scans. Both INC and CMI have access to CAT scans, but do not have MRI imaging
available within the hospital, and must send their patients to outside facilities for these
evaluations when needed. This variation in availability also affects the timing in which patients
are able to undergo diagnostic imaging tests. Patients at IPS are able to obtain imaging exams in
a timely manner. Although MRI is not available in the hospital, patients from CMI have an
agreement with a private facility that is funded through a foundation, and for this reason they
are able to obtain radiology tests relatively quickly. For out-patients treated at INC there is a
significant delay, usually two to three months, for either CAT or MRI scans. All facilities have
access to anesthesia for young patients when needed to optimize performance of the imaging
tests (Table 9).
Table 9: Radiology results of the quantitative questionnaire on available resources:
Social Security Public Hospital #1 Public Hospital #2
Imaging availability CAT and MRI
Scans
CAT Scan only CAT Scan only
Quality of machines Very good Very good Very good
Time to
obtain:
In-patient
CAT Scan
2-7 days 2-7 days 1 day
In-patient
MRI Scan
2-7 days Not available 1-2 weeks
Out-patient
CAT Scan
1-2 weeks 2-3 months 2-7 days
Out-patient
MRI Scan
1 month 2-3 months 1 month
Availability of anesthesia for
optimal imaging test
Yes Yes Yes
There is interesting variation in the accessibility of radiation therapy as well. INC has
radiotherapy machines within the hospital; however, those patients often experience the most
30
significant delays. INC has one cobalt machine and one linear accelerator available, but shares
these facilities with the adult patients at this institution, who often substantially outnumber the
pediatric population. Both IPS and CMI have contracts with a private facility for radiation
therapy services and sometimes experience delays in initiation of therapy. The type of radiation
therapy available appears to be the same, 2-dimensional and conformal radiation, while more
advanced therapies, such as intensity modulated radiation therapy are not available (Table 10).
Table 10: Radiation Therapy results of the quantitative questionnaire on available resources:
Social Security Public Hospital #1 Public Hospital #2
Are radiation therapy
machines available in your
hospital
No Yes No
If not available, where do
your patients receive
radiation therapy
Outside private
facility
N/A Public hospital #1 or
outside private
facility
Who pays for the radiation
therapy
Hospital Hospital Foundation
Which types of machines
are available to your
patients
Linear accelerator
and cobalt machine
Linear accelerator
and cobalt machine
Linear accelerator
and cobalt machine
How would you rate the
quality of these machines
Acceptable Acceptable Good
What type of irradiation
therapy is available to your
patients
2-dimensional
irradiation
2-dimensional
irradiation
2-dimensional and
conformal
irradiation
How is simulation
performed for radiation
therapy planning
With CAT-Scan (3-
dimensional)
With CAT-Scan (3-
dimensional)
unknown
How often is there a delay
in initiation of radiation
therapy
Sometimes Almost always Sometimes
There are some similarities and differences with regard to the supportive care available for
these patients. Both IPS and INC have a palliative care physician who specializes in adult care
31
but often consults on the pediatric patients that require her services. They are able to provide
analgesia therapy when needed and psychosocial support. All three hospitals have access to the
essential medications for pain and palliative care. Both IPS and CMI have physical therapy
services with occupational services available at CMI as well. None of these facilities provides
speech therapy to their patients. IPS is able to utilize central venous catheters while the two
public hospitals rely on peripheral venous access to administer therapy. With regard to
psychosocial services, all three hospitals have a social worker and psychologist as part of the
medical care team, while IPS and CMI utilize a psychiatrist as well. Additionally, CMI was the
only facility that utilized nurses trained in pediatric oncology (Table 11). All three facilities
provide education to the patients and their families regarding their diagnosis and management.
Table 11: Supportive Care results of the quantitative questionnaire on available resources:
Social Security Public Hospital #1 Public Hospital #2
Is there a palliative care
program
Adult program Adult program No
Are there rehabilitation
services
Some None Some
Is there an Intensive Care
Unit available
Yes-7 beds No Yes- 11 beds
Are there psychosocial
services available
Yes Some Yes
Do nurses receive specialty
training in pediatric oncology
No No Yes
Is there family support
(housing, meals,
transportation, temporary
employment)
No Some Yes
What is the average distance
your patients travel to get to
the medical center
1-7 hours >4 hours 3-4 hours
Who pays for therapy Insurance Hospital +
Foundation
Patient/Family,
Hospital, +
Foundation
32
Through substantial private foundation support, CMI has been able to provide housing,
transportation, and meals to families when necessary. IPS does not provide these services,
although due to the higher socio-economic status of their patient population these services are
rarely necessary. The patients cared for at INC often require these services but do not have
sufficient access; housing and meals are sometimes provided to families, but no additional
support for transportation or temporary employment is supplied. At the IPS hospital, all
services are paid for by the social security insurance coverage. For both INC and CMI,
medications and necessary devices are provided through foundation support while procedures
are covered by the hospital. At INC the hospital also covers radiation therapy, blood tests, and
imaging, while at CMI these are covered by either the family or the foundations that support
them.
33
Chapter Five: Discussion
Available Resources
Based on the results of the comprehensive needs assessment, it was determined that children
with pediatric CNS tumors are managed by pediatric oncologists at all three facilities.
Additionally, it appears that all patients have access to the necessary medications, such as
chemotherapy and antibiotics, and supportive care medications including analgesics, anti-
seizure medications, and anti-emetics.
Common versus Individual Deficiencies
There are common as well as discrete deficiencies in resources available for the management of
children with CNS tumors at the three treating facilities in Paraguay. Under-diagnosis of
pediatric cancer, particularly brain tumors, is a significant problem affecting all three
institutions. Across the three hospitals, there are 35 to 50 children diagnosed with a CNS tumor
each year. However, based on a pediatric population of 2.4 million, one would expect
approximately 80 to 90 new diagnoses each year, implying that almost 50% of children with a
CNS malignancy remain undiagnosed. Understanding the likelihood that these children will
subsequently die from their malignancy, one can predict that the mortality rate for these
children is likely more than double that which is currently documented.
Additionally, one of the public hospitals noted that at least 50% of their patients present with
disseminated disease. This factor is significant since the ability to adequately treat and cure
these patients is substantially diminished when compared to treatment of patients that present
34
with local disease. Based on the literature and results from the key informant interviews, it
appears that delays in treatment are due to delays in diagnosis, which are associated with a
variety of factors. One possible problem could be lack of recognition of presenting signs and
symptoms amongst community physicians. Although CMI has been increasing awareness
regarding pediatric cancer in the region surrounding the first satellite clinic, Ciudad de Este,
there may still be substantial lack of knowledge regarding early diagnosis that allows these
children with CNS tumors to remain undetected. Additionally, deficiencies in the referral
pathway due to a lack of communication between community physicians and surgeons and the
referral center, were mentioned by many members of the treating medical team. As a result,
there are many patients that never enter the pediatric oncology system and are likely not being
managed appropriately.
Lastly, variation in the perception regarding availability of therapy and ability to properly treat
and cure these patients may prevent prompt diagnosis. One situation that was brought to our
attention was that of an adolescent girl who was found to have a high-risk medulloblastoma.
Initially, the community physician stated there was nothing to be done without ever discussing
the case with a pediatric oncologist. The family proceeded to seek a second opinion, obtained
the appropriate care, and the patient continues to do well. However, there may be many
patients that are unable to proceed in this manner and are subsequently sent home without
receiving proper therapy, whether it were to be curative or palliative treatment.
Common deficiencies in neuropathology were also demonstrated in Paraguay, including a lack of
subspecialty trained neuropathologists and access to essential immunohistochemical stains that
35
are essential to maximize diagnostic accuracy. For these reasons, there are difficulties in
obtaining the appropriate diagnosis, which greatly impacts the efficacy of the therapy
administered.
A lack of optimal training and equipment in the neurosurgical management of these patients
was also demonstrated. The low rates of gross total resection and high rates of infection shown
in the preliminary data from both the public and social security hospitals mentioned above
supports these data, which may reflect the extent of training, availability of appropriate
equipment, and education regarding post-operative management. The literature addressing the
situation surrounding neurosurgery in Latin America in general demonstrates a lack of
neurosurgeons, specialized care centers, and equipment, particularly in rural areas. WHO
recommends 1 neurosurgeon per 100,000 inhabitants and possibly more in low- and middle-
income countries as the rate of trauma requiring these services has been shown to be higher.
This would indicate there should 70 neurosurgeons in Paraguay; a need which we would predict
has not yet been met (Balanzar GG 2010; Ferrer MB and De Felice P 1980).
In addition to these common barriers, there was significant variation in the resources available
to patients treated at the different facilities in Paraguay. Children treated at the public hospitals
have poor access to optimal imaging studies, specifically MRI scans. For CNS malignancies in
particular, MRI scanning is essential for diagnosis, guidance in surgical management, and
assessment of surgical resection, leading to critical treatment decisions. The inability to utilize
MRI imaging for essential pre- and post-operative evaluation hinders the ability to provide
adequate care.
36
Decreased access to appropriate, timely radiation therapy was also noted amongst the public
facilities. At INC, although there are radiation therapy machines available in the hospital, the
lack of sufficient availability for the patient population and the below-average quality of the
machines utilized, lead to sub-optimal care for these patients. It is recommended that each
cobalt and linear accelerator should treat 350 and 400 patients respectively per year (Barton MB
et al., 2006). According to one report published in 2006, Paraguay had 6 machines in total.
However, based on their population and case load, the country should have 8 machines. They
ranked 12
th
out of 24 countries in Latin America for radiotherapy machines per million people in
the population (Barton MB et al., 2006). However, although they have almost met their demand
in number, studies have demonstrated the lack of quality. More than 28% are considered level
0, meaning there is no means for simulation for therapy planning or custom blocking to deliver
appropriate therapy, thereby substantially increasing the risk of harm to the patient (Zubizarreta
EH et al., 2004). Moreover, a lack of communication was demonstrated amongst the medical
teams at all three hospitals, which may also affect the quality of care and ultimately alter patient
outcomes.
There was substantial discrepancy in the support provided to patients and families. Even
though the CMI hospital is a public facility, it provides transportation, housing, meals, and
temporary employment to patients’ families when needed. These services are a result of
substantial organization, program development, and tremendous foundation support. The
services may have contributed to the decline in their rates of abandonment of therapy amongst
their patients. INC, on the other hand, is also a public facility that cares for patients from a low
socio-economic status but is unable to consistently provide many of these services. This may
37
contribute to their relatively high rates of abandonment, which ultimately affects patient
outcomes. IPS also does not provide these supportive services; however their patient
population often does not require such services.
Potential Interventions
The development of the childhood cancer network and regional satellite clinics has already
begun to address the problem of under-diagnosis of pediatric cancer in Paraguay. Building on
what has already been initiated will enable us to increase awareness regarding pediatric CNS
tumors in particular. Educational seminars have been proposed for clinicians and surgeons
within the various catchment areas of each satellite clinic. Topics to be addressed will include
presenting signs and symptoms of CNS tumors in children, the availability of treatment in
Paraguay and how to navigate the referral pathway to ensure the child receives the most
appropriate care. Moreover, results from a qualitative survey regarding knowledge and
perception surrounding childhood brain tumors will provide data to develop seminars that
specifically target the needs of the community.
In Paraguay, a nationwide deficiency in training in neuropathology has been demonstrated
which can affect diagnostic accuracy and thereby impact management and patient outcomes.
One method to address this issue is to establish a systematic expert review of all specimens.
This could initially start with central review of pathologic diagnosis at CHLA, which has long-
standing expertise in pediatric neuropathology, while training pathologists in Paraguay to
develop local expertise. Additionally, on-line case reviews with participating oncologists and
pathologists from Paraguay and a more experienced center such as CHLA could be initiated to
38
enhance proficiency in recognition of the key distinguishing histological characteristics of the
most common pediatric CNS tumors to improve initial diagnostic accuracy. In order to assess
the efficacy of these interventions, one could administer a pre- and post-intervention
questionnaire on these topics as well as compare the accuracy of diagnosis before and after
initiation of increased training interventions. Additionally, a list of essential
immunohistochemical stains should be developed as a means to petition for the Health Ministry
to facilitate increased access.
Barton et al
(Barton MB et al. 2006) outline strategies to improve radiation therapy services in
low- and middle-income countries. One aspect they discuss is service planning, which requires
investment in quality equipment and appropriate staff to plan and administer optimal radiation
therapy. Another facet that could be helpful would be to develop links to radiation oncology
facilities with increased experience. For example, the radiation therapy services in Costa Rica
are well developed and could serve as a training center for other countries in the region with
less experience. Those in Paraguay could link up with this center or other experienced centers
in South America, including Brazil, Argentina, or Chile. Lastly, Barton et al. recommend
increased education through improved access to peer-reviewed journals and seminars regarding
cancer and the role of radiation therapy (Barton MB et al., 2006).
Strengthening the local multidisciplinary team will also likely improve outcomes. Increased
communication and collaboration amongst the various disciplines that are integral to the care of
these patients will improve the comprehensive care delivered. Ideally, neurosurgeons will
consult pediatric oncologists prior to surgery so that there is proper post-operative continuity of
39
care. Radiation oncologists and pediatric oncologists should work together to develop radiation
therapy plans that will provide optimal therapy for each individual patient. Each member of the
medical team can make important contributions to the care of these children, and these efforts
should be combined to provide appropriate management.
Strategies Implemented To Date
The medical teams from each participating institution, in Paraguay and CHLA, attend regular
online meetings for case presentations as well as discussion of program development via the
www.cure4kids.org website, designed by St Jude Children’s Research Hospital to provide free
education and tools for communication. Additionally, as a first step towards increasing training
in neuro-oncology, one of the pediatric oncologists from Paraguay (Dr. Veronica Kim) visited
CHLA for a one month clinical rotation in the Neural Tumors Program, one of the largest in the
United States, treating an average of 120 new patients per year. During this time, she had the
opportunity to attend in-patient solid tumor rounds, the out-patient CNS tumor clinic, and
various clinical and educational meetings, such as the weekly multidisciplinary brain tumor
patient care conference.
It is well-established that uniform diagnosis and treatment guidelines contribute to improved
patient outcomes (Antillon F et al., 2005; Wilimas JA and Ribeiro RC 2001; Howard SC et al.,
2004; Qaddoumi I et al., 2008; Howard SC et al., 2008; Ribeiro R and Bonilla M 2000). Therefore,
in an effort to standardize care in Paraguay, a set of treatment guidelines for common pediatric
CNS tumors based on available resources has been developed in conjunction with Paraguayan
colleagues. Uniform treatment guidelines have been developed for the most common CNS
40
tumors, such as medulloblastoma, ependymoma, germinoma, low-grade gliomas, and CNS germ
cell tumors. After completion of these guidelines, our colleagues in Paraguay have reviewed
them to evaluate their applicability and feasibility based on available resources and the patient
population. These will be made available to pediatric oncology groups from other low-income
countries for utilization if found to be locally applicable.
The team of collaborators from CHLA and Paraguay successfully held the first Spanish language
International Pediatric Brain Tumor Symposium in Asuncion, Paraguay, in August 2010. The
principal aim of this symposium was to improve current understanding of the diagnosis and
management of children with CNS tumors amongst health care workers, as well as to increase
awareness in the medical community in Paraguay regarding pediatric CNS cancer. The pertinent
disciplines that were represented at this educational event included neuro-oncology,
neurosurgery, neuro-radiology, neuropathology, radiation oncology, data management, and
palliative care. A separate nursing seminar was also held to address patient care issues and
improve nurse training. Through educational lectures, small group sessions, and case
presentations, the multidisciplinary approach to patient care was emphasized to facilitate
development of local multidisciplinary teams to provide more comprehensive care. By inviting
experts from neighboring South American countries, including Brazil, Chile, and Argentina, we
aimed to foster partnerships with the surrounding countries that have additional resources and
expertise but similar patient populations and restrictions. The event was also open to
participants from other South American countries, with attendees joining from Bolivia and
Uruguay.
41
Chapter Six: Conclusions
What can be determined from these data is that there are common as well as discrete
deficiencies in resources available for the management of children with CNS tumors in three
treating facilities in Paraguay. Moreover, it appears that poor outcomes are associated with lack
of resources and support. These findings will aid in the development of targeted strategies to
improve early diagnosis and optimal therapy. Examples include increased training and tools for
neuropathology and improved access to imaging and radiation therapy for all patients. An
intervention to increase family support may also improve outcomes, as this is a factor that has
been shown to be effective in Paraguay as well as other low-income countries (Antillon F et al.,
2005; Howard SC et al., 2004; Howard SC et al., 2008; Ribeiro R and Bonilla M 2000). Some
supportive measures already in place include the development of local multidisciplinary teams,
commencement of on-line conferences, implementation of standardized treatment guidelines,
and conduct of the first Spanish language International Pediatric Neuro-oncology symposium
held August 2010. If effective, these strategies will serve as a model for the development of
pediatric CNS tumor programs in similar low-income settings.
42
Chapter Seven: Future Plans
Validation of Needs Assessment Survey
We intend to utilize a two-pronged approach to complete a rigorous validation of the
quantitative questionnaire. For those physicians that have already completed the
questionnaire, we will request feedback to evaluate the process of answering the survey. For
example, we would want to know about any difficulty in answering the questions, the length of
time it took to complete the survey, the clarity of the questions, and any additional suggestions
from their perspective on methods to improve this tool.
The second approach that will be utilized is expert review to determine content validity, which is
an approach that has been used by many researchers in the development of survey instruments.
We have chosen five experts to review this survey, all of whom have experience in both
management of children with CNS tumors and issues regarding childhood cancer in low-income
countries. These experts will review the items on the questionnaire and rate each one on its
relevance, clarity, simplicity, and ambiguity based on a four-point scale with the ability to make
additional comments when necessary(Table 12) (Yaghmaie F 2003).
Table 12: Scales Utilized for Relevance, Clarity, Simplicity, and Ambiguity:
Relevance Clarity Simplicity Ambiguity
1-Not relevant 1-Not clear 1-Not simple 1-doubtful
2-Somewhat
relevant
2-somewhat clear,
needs revision
2-Somewhat simple,
needs revision
2-Item needs
some revision
3-Quite relevant 3-Quite clear, may need
minor revisions
3-Quite simple, may
need minor revisions
3-No doubt, but
may need minor
revision
4-Highly relevant 4-Very clear 4-Very simple 4-Meaning is clear
43
Rating on relevancy is a common practice to determine the ‘content validity index’ (CVI) of
research tools such as this (Table 12) (Polit DF and Beck CT 2006; Polit DF et al., 2007). Each
item is rated on relevancy based on the scale described above. The first step would be to
calculate an item specific content validity index (I-CVI). For each item, the number of experts
that give a rating of three or four is then divided by the number of total experts, giving the
proportion of experts in agreement on the relevance of each item. Then, depending on the
number of experts, we would determine the proportion that is considered acceptable.
According to some experts, including Lynn et al (Lynn MR 1986), 100% agreement should be
attained when using five experts or less for an item to be considered relevant. When using a
panel of six experts or more, a level of agreement of 78% or more would be considered relevant,
thereby allowing for some disagreement. Revisions and deletions could then be made based on
this review and the scale CVI (s-CVI) could be calculated on the revised survey. We would use
the S-CVI average method to determine overall relevancy of the completed tool (Polit DF and
Beck CT 2006; Polit DF et al., 2007).
Next Steps in Paraguay
Fragmented care, lack of resources, and economic and psychosocial issues that affect patients
and families create barriers to appropriate care in countries like Paraguay. However, formal
investigations are required to elucidate which factors have the greatest impact on patient
outcomes. It is hypothesized that the incidence of treatment failure is higher in Paraguay and
will be associated with a unique set of risk factors when compared with patients from high-
income countries. A retrospective review on the incidence of treatment failure will provide an
objective measure of patient outcomes and a baseline for future outcome evaluation when
44
assessing efficacy of executed action plans. Treatment failure will be defined as progression of
disease, relapse, treatment or disease associated mortality, and abandonment of therapy.
Identification of associated risk factors will aid in the development of targeted interventions.
Data regarding biologic factors, such as disease and treatment information, as well as socio-
economic factors, including patient demographics, and causes and timing of treatment failure,
will be collected. Determination of relevant variables is based on prior research on pediatric
CNS tumors as well as pediatric oncology care in low-income countries (Pollack, I.F. 2009;
Packer, R.J. 2008; Metzger, M.L et al., 2003; Duffner, P.K. et al. 2008; Gupta, S. et al. 2009;
Aurora R.S. et al. 2007; Howard, S.C. et al. 2008) Chart reviews will be performed to gather data
on pediatric patients diagnosed with CNS tumors from January 2008 to December 2010 at the
participating institutions. This information will then be analyzed to determine the causes of
treatment failure and associated risk factors. Event-free and overall survival will be determined
using the Kaplan-Meier method. Univariate and multivariate Cox proportional hazard ratios will
be calculated to determine risk factors that are statistically significantly associated with
treatment failure overall as well as for each individual cause. This information can be utilized in
conjunction with the results of the quantitative questionnaire to development targeted
strategies to optimize management of children with CNS tumors in Paraguay.
To aid in this retrospective review as well as provide baseline data in this patient population, a
hospital based tumor registry will be established. A uniform data set will be determined and
pertinent information on patient demographics, diagnosis, and treatment will be prospectively
collected to develop a pediatric CNS tumor registry at each participating facility. This will
facilitate continual assessment of the state of care as well as allow for evaluation of efficacy of
45
implemented interventions through outcomes analysis. All data will be entered in the Pediatric
Oncology Networked Database (www.pond4kids.org), a free internet-based database created
for data management of pediatric cancer patients currently used by over 120 oncology centers
in 40 countries.
A qualitative questionnaire will also be created to assess healthcare workers’ knowledge and
perceptions of diagnosis and management of children with CNS tumors. Relevant topics and
important participants, including pediatric oncologists, general physicians, neurologists,
neurosurgeons, and other relevant health care workers, will be identified. A set of both closed-
and open-ended questions will be developed to obtain a valid assessment. Characteristics such
as the ability to recognize common signs and symptoms of a child with a brain tumor, familiarity
with the appropriate steps for early diagnosis and referral to care, and perception of the benefit
of treatment and chance of cure for these patients will be evaluated. The questionnaire will be
implemented among health care workers within two catchment areas; one in the area of a
previously established satellite clinic that has received additional training in early diagnosis of
cancer in children and the other in a region that has not received this additional training. This
process will demonstrate the baseline knowledge and perception among health care workers
regarding diagnosis and treatment of pediatric CNS tumors as well as determine the impact of
interventions already implemented. Educational tools to improve early diagnosis and
appropriate referral for children with brain tumors will be developed based on these results.
The next steps would include development and implementation of a strategic plan composed of
targeted interventions based on results of the retrospective review on treatment failure, the
46
quantitative and qualitative needs assessments and a tumor registry, which will lead to
improved patient outcomes. Potential interventions include establishment of a national brain
tumor team, training in necessary services, and development educational tools and community
programs to increase awareness regarding pediatric brain tumors. Re-administration of the
quantitative questionnaire with improvement of the results would indicate that issues identified
had been addressed. Additionally, an increase in knowledge and decrease in misperceptions
surrounding management of patients would demonstrate the efficacy of educational tools and
methods to increase awareness. Analysis of short term outcomes, including incidence,
infectious complications, and early death or relapse, and long term outcomes, such as quality of
life and survival, would also aid in the evaluation of the efficacy of the action plan.
Global Utilization of the Survey
The ultimate goal is to develop a model that can be used in similar low-income settings. For
global use of these tools, rigorous validation is required to ensure applicability, feasibility, and
utility. Once these tools have undergone evaluation and validation, they will be implemented in
other low-middle income countries, such as those in the Central American Pediatric
Hematology/Oncology Association (AHOPCA) to evaluate the state of pediatric brain tumor
management on a wider scale (Table 1, Figure 6).
3-6
Such countries have similar demographics
as those in Paraguay, including the size of the pediatric population and infant mortality rates.
Results can be compared to those from centers in high-income countries, such as those in the
United States and Canada, to identify specific global gaps in care.
47
Figure 6: Central America Region:
48
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Appendix: Needs Assessment Questionnaire: Pediatric Brain Tumors
General Information:
Name of person filling out the form: __________________________ MD [ ] Nurse [ ] Other [ ]
Hospital/Institution________________________________________________________
Service/Departament_____________________________________________________
City/Country______________________________________________________________
Epidemiology:
1. How many children are diagnosed with a central nervous system tumor per year at your
hospital? ____________
2. On average, how many patients present with: (Please mark only one)
a. Localized disease? (without metastasis):
None (0%) Few (1-35%) Half (36-65%) Majority (66-99%) All (100%) I don’t know
b. Disseminated disease (with metastasis):
None (0%) Few (1-35%) Half (36-65%) Majority (66-99%) All (100%) I don’t know
3. Additional Comments: __________________________________________________________
Oncology:
1. In your hospital, who usually treats the children with central nervous system tumor? (Mark all
that apply)
Yes No
Pediatric Oncologists
Adult Oncologists
Neurologists
Adult neuro-oncologists
Pediatric neuro-oncologists
Pediatricians
Adult Internists
Neurosurgeons
Other surgeons
2. How many pediatric oncologists that treat children with central nervous system tumor work in
your hospital? ____
3. Availability of Specialist Medical Coverage: (Mark one answer for each)
In the hospital 24
hours per day
Available to come
to the hospital 24
hours per day
Not available 24
hours per day
Not
applicable
Physician
(resident or attending)
Pediatric physician
(resident or attending)
Pediatric oncologist
(fellow or attending)
53
4. Are essential chemotherapy medications available in your hospital? (see attached list of essential
medications)
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t know
5. What percentage of patients is treated according to a written protocol?
None (0%) Few (1-35%) Half (36-65%) Majority (66-99%) All (100%) I don’t know
6. Over the last 5 years, what is the approximate overall survival rate for children with central
nervous system tumors treated at your institution? (Please mark one and write in the exact
percent if known)
None (0%) Few (1-35%) Half (36-65%) Majority (66-99%) All (100%) I don’t know
7. Over the last 5 years, approximately how many of the children treated at your institution have
abandoned therapy after being diagnosed with a central nervous system tumor each year?
(Please mark one and write in the exact percentage if known)
None (0%) Few (1-35%) Half (36-65%) Majority (66-99%) All (100%) I don’t know
Total: ____________________
8. On average, How much time passes between: (please mark one for each question)
1-2 weeks 1 month 3
months
>3
months
Not available to
most patients
treated at my
hospital
I don’t
know
a. Detection of a brain
tumor
surgery/biopsy?
b. Surgery/biopsy
Initiation of radiation
therapy or
chemotherapy?
9. Additional Comments:
__________________________________________________________________________
Surgery:
1. Is neurosurgery performed at your hospital?
Yes No Don’t Know
2. How many neurosurgeons work at your hospital? _____________________________________
a. How many pediatric neurosurgeons work at your hospital?
_____________________________________
b. If there is a neurosurgeon, how many days per week do they work at your hospital?
____________________
c. If neurosurgery is not available at your hospital, where are your patients with central
nervous system tumors referred for neurosurgical procedures?
________________________________________________________
3. Approximately how many surgical resections of pediatric central nervous system tumors are
performed at your hospital per year?
None 1-3 4-10 11-20 20-30 >30 I don’t know
54
4. Per year, approximately how many patients are diagnosed with a central nervous system tumor
at another hospital and then referred to your hospital for further evaluation and management
after their surgery?
None (0%) Few (1-35%) Half (36-65%) Majority (66-99%) All (100%) I don’t know
5. Do the operating rooms at your hospital have all the necessary equipment to perform a biopsy
and resection of a central nervous system tumor?
Yes No Don’t Know
a. What neurosurgical devices are available at your hospital?
Yes No
Ventriculoperitoneal shunt
External Ventricular Drain
Other? _________________________________________________________
6. Additional Comments:
_______________________________________________________________________
Pathology:
1. How many pathologists work at your hospital?
_________________________________________________
a. How many of these pathologists are trained in
neuropathology?_____________________________
2. Approximately how many cases of pediatric central nervous system tumors are reviewed at your
hospital per year?
None 1-3 4-10 11-20 20-30 >30 I don’t know
3. Which diagnostic immunohistochemical stains are available at our hospital? (Please mark all that
apply)
Immunohistochemical Stain Yes No Don’t Know
Hematoxylin y Eosin (H & E)
Glial Fibrillary Acidic Protein (GFAP)
Synaptophysin
MiB-1/ki-67
Other? Please write in: ______________________________________________
4. Is cytopsin to evaluate cerebral spinal fluid samples performed at your hospital?
Yes No Don’t Know
5. Additional
Comments_______________________________________________________________
55
Radiology
1. Which methods to perform imaging are available at your hospital? (Please mark each and write
in the number of machines available if known)
Machine Yes No Number of Machines
Computerized Tomography (CT Scan)
Magnetic Resonance (MRI)
Positron Emission Tomography (PET Scan)
2. How would you rate the quality of the imaging equipment available?
Poor Acceptable Good Very good Excellent
3. After ordering an imaging exam, what is the average time you have to wait it to be performed?
(Mark one answer for each)
1
da
y
<1
week
1-2
weeks
1
month
2-3
months
>3
months
Not
available
Until
the
patient
is able
to pay
for it
Don’t
Know
In-
patient
Magnetic
Resonance
(MRI):
Computerized
Tomography
(CT Scan):
Out-
patient
Magnetic
Resonance
(MRI):
Computerized
Tomography
(CT Scan):
4. How many radiologists work in your hospital?
_____________________________________________
a. How many neuroradiologists work in your hospital?
___________________________________
5. Additional Comments___________________________________________________________
Radiation Oncology
1. Are there machines for radiation therapy available at your hospital?
Yes No
a. If not available in your hospital, where do your patients receive radiation therapy when
needed? _______
b. Who pays for the radiation therapy?
__________________________________________________________
56
2. Which types of radiation therapy machines are available at your hospital or the facility where
they receive their radiation therapy?
Machine Yes No How many machines are available
Cobalt
Linear Accelerator
Other? Please write in: ______________________________________________
3. How would you rate the quality of the radiation therapy machines utilized?
Poor Fair Good Very good Excellent
4. Are there policies in place for quality assurance?
Yes No Don’t Know
Machine quality
Radiation field planning
Therapy delivery
5. What types of radiation therapy are available for your patients? (Mark all that apply)
Yes No Don’t Know
2-dimensional
Conformal radiation (3-dimensional)
IMRT (Intensity Modulated Radiation Therapy)
Brachytherapy
Stereotactic radiation therapy
Gamma knife therapy
6. What methods are used to perform simulation to decide on the fields used for radiation therapy
planning? (Mark all that apply)
Yes No Don’t Know
With X-Ray (2-dimensional)
With Computerized Tomography (CT Scan - 3-dimensional)
Not available
7. Per year, approximately how many children with brain tumors require radiation therapy as part
of their treatment?
None 1-3 4-10 11-20 20-30 >30 I don’t know
8. How often is there a delay in the initiation or completion of radiation therapy for your patients
with brain tumors?
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t
know
a. How long is the delay in initiation of radiation therapy?
1 week 2-4 weeks 1-2 Months > 3 months Not available to our
patients
Don’t know
9. Additional Comments:
___________________________________________________________________
57
Palliative Care
1. Is there a palliative care team at your hospital?
Yes No Don’t Know
2. Are medications for palliative care (morphine, dilaudid, ativan, etc) available at your hospital?
(see attached list)
a. For in-patients?
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t know
b. For out-patients
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t know
3. What palliative care services are offered at your hospital?
_____________________________________________________________________________
Supportive Care
1. Which rehabilitation services are available at your hospital?
Yes No Don’t Know
Physical Therapy
Occupational Therapy
Speech Therapy
2. How many beds are available in your hospital for pediatric cancer patients? ______________
a. Is there an intensive care unit available in your hospital that can care for children after
they have had neurosurgery?
Yes No
b. How many pediatric beds are available?
________________________________________________
3. Is there an infection control program available at your hospital?
Yes No Don’t Know
a. Please describe: ________________________________________________
b. Are there infection control policies (i.e. hand washing, sterile technique for appropriate
procedures, etc) in place?
Yes No Don’t Know
c. Can bacterial cultures be obtained to detect infections?
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t know
58
4. In your hospital, are central venous catheters used for treatment of children with brain tumors?
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t know
5. Are necessary supportive care medications available at your hospital? (see attached list of
medications)
a. Antimicrobials?
i. Gram positive coverage (Vancomycin or similar antibiotic that can treat MRSA)?
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t know
ii. Gram negative coverage (Cefepime, Meropenem, etc)?
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t know
iii. Antiviral medications?
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t know
iv. Antifungal medications?
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t know
b. Anti-epileptic medications?
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t know
c. Anti-emetic medications?
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t know
6. Is anesthesia available for procedures at your institution?
a. For imaging tests (i.e. MRI imaging)
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t know
b. For procedures (i.e. lumbar puncture/bone marrow aspiration and biopsy)
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t know
7. Additional Comments: __________________________________________________________
Ancillary Staff – Nursing and Social Work
1. Are there nurses specialized in pediatric oncology at your hospital?
Yes No
59
2. Which psychosocial services are available for your patients and families? (Mark all that apply)
Yes No Don’t Know
Social worker
Psychiatrist
Psychologist
Child life specialist
3. Is there some form of educations regarding diagnosis and treatment provided to the patient and
their family?
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t know
a. What information is provided? ______________________________________________
b. How is this information provided? ___________________________________________
c. Who provides the education to the patient and their family? _____________________
d. Are there any language barriers when communicating with the patients and their
families?
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t know
4. On average, how much time do your patients spend traveling from their home to the
hospital/medical center for treatment?
Less than 1 hour 1-2 hours 3-4 hours >4 hours I don’t know
5. Are there resources available to help patients and their families pay for transportation to the
hospital/medical center when needed?
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t know
6. Are there options for housing when needed for the patient or their family during treatment if the
patient lives far from the hospital?
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t know
7. Is there food available for and provided to family members if needed?
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t know
60
8. Who pays for: (Please mark all the apply for each of the services listed)
Patient/Family Government
Hospital
Social
Security
Private
Insurance
Non-profit
Foundation
Other
Chemotherapy
Blood tests?
Imaging?
Antibiotics?
Procedures?
Devices (VPS)?
Radiation
therapy?
Neurosurgery?
Blood
transfusions
9. Additional Comments: ___________________________________________________________
Data Management
1. Is there a patient database in use?
Always
(100%)
Almost always
(66-99%)
Half the time
(36-65%)
Sometimes
(1-35%)
Never
(0%)
I don’t know
2. Who enters data into the database? _____________________________________________
Additional Feedback:
1. What do you feel are the three main strengths of your hospital in the care of children with brain
tumors?
i. _
ii. _
iii. _
2. What do you feel are the three main weaknesses of your hospital in the care of children with
brain tumors?
i. _
ii. _
iii. _
3. In your opinion, what are the three most important factors that need be improved at your
hospital to improve the care of children with brain tumors?
i. _
ii. _
iii. _
Abstract (if available)
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University of Southern California Dissertations and Theses
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Asset Metadata
Creator
Baskin, Jacquelyn
(author)
Core Title
Evaluation of the current state of management of children with central nervous system tumors in Paraguay through a comprehensive needs assessment
School
Keck School of Medicine
Degree
Master of Science
Degree Program
Preventive Medicine (Health Behavior)
Publication Date
05/10/2011
Defense Date
05/06/2011
Publisher
University of Southern California
(original),
University of Southern California. Libraries
(digital)
Tag
low-income setting,needs assessment,OAI-PMH Harvest,Paraguay,pediatric brain tumors
Place Name
Asunción
(city or populated place),
Ciudad del Este
(city or populated place),
Paraguay
(countries)
Language
English
Contributor
Electronically uploaded by the author
(provenance)
Advisor
Finlay, Jonathan (
committee chair
), Azen, Stanley Paul (
committee member
), Rohrbach, Louise A. (
committee member
)
Creator Email
jbaskin@chla.usc.edu,jlbaskin@usc.edu
Permanent Link (DOI)
https://doi.org/10.25549/usctheses-m3937
Unique identifier
UC1445325
Identifier
etd-Baskin-4499 (filename),usctheses-m40 (legacy collection record id),usctheses-c127-476728 (legacy record id),usctheses-m3937 (legacy record id)
Legacy Identifier
etd-Baskin-4499.pdf
Dmrecord
476728
Document Type
Thesis
Rights
Baskin, Jacquelyn
Type
texts
Source
University of Southern California
(contributing entity),
University of Southern California Dissertations and Theses
(collection)
Repository Name
Libraries, University of Southern California
Repository Location
Los Angeles, California
Repository Email
cisadmin@lib.usc.edu
Tags
low-income setting
needs assessment
pediatric brain tumors