The grander challenge of pediatric oncology: disparities in
access to care
Joseph Lubega, M.D., M.S., C.P.E.
Baylor College of Medicine
6701 Fannin St., Ste. 1510
Houston, TX 77030
lubega@bcm.edu
Phone: +1 832 822 4242
Fax: +1 832 825 1453
Word count: 968
Short running title: Disparities in access to pediatric cancer care
Keywords: pediatric cancer, disparities, global, minorities
The excellent survival of children with cancer in the United States (US)
is a grand achievement that has been accomplished mainly through five
decades of translating biomedical discoveries to the bedside. However,
it obscures the significantly inferior survival of racial-ethnic
minorities in the US1, 2, and highlights the
unconscionably abysmal survival of children with cancer
globally3. Intrinsic differences in epidemiology of
prognostically relevant tumor and host biological factors contribute to
these survival disparities. However, as demonstrated by the fact that
the widest survival disparities occur among children with the most
curable cancers and risk-groups2,4, the primary driver
of inferior survival among minorities and children globally islack of access to effective pediatric cancer care. Discovery of
efficacious therapies was/is the grand challenge to pediatric oncology;
ensuring access to effective care for all children in the US and
globally is the grander challenge of pediatric oncology.
Access to health services is a complex construct that
includes5: (1) availability of the services to
a specific population, (2) adequate supply of the services to the
population, (3) ability to utilize the health services, which
includes requisite financial (e.g., medical insurance coverage) and
social (e.g., flexibility of work schedule to attend medical
appointments) resources, and (4) suitability of the services to
the socio-cultural context of all demographic groups in the population.
For the majority of the world’s children that develop cancer
(~80%) and live in low/middle income countries,
infrastructure and expertise for evidence-based pediatric oncology
services are simply unavailable or are extremely scanty. On the other
hand, racial-ethnic minorities in the US also suffer from lack of access
to adequate pediatric oncology care despite the apparent abundance of
services – suggesting barriers to utilization and/or suitability of
services.
In this issue of Pediatric Blood & Cancer , Zheng D.J. et al
present an evaluation of access to a psychiatry service that is
integrated into a children’s cancer center – the Dana-Farber/Boston
Children’s Cancer and Blood Disorders Center (DF/BCH) from 2013 to 2017.
The authors examined the relationship between utilization of this
psychiatry service and patients’ socio-demographic characteristics.
Among a sample of 394 children with cancer that were evaluated,
racial/ethnic minorities had 52% lower odds of using the psychiatry
service. Household material hardship and household income, two
indicators of financial deprivation that may be considered the most
obvious determinants of service utilization, did not influence
utilization of this psychiatry service. For children who utilized the
psychiatry service, 88% were diagnosed with a psychiatric disorder,
76% were given a pharmacological therapy and 62% were given a
behavioral intervention for their diagnosis. The high occurrence of a
specific diagnosis and therapeutic interventions for the children that
used the psychiatry services suggest that this is a highly valuable
service for children that are referred.
Zheng D.J. et al’s findings demonstrate that availability of services
does not equate to access, and that it is often difficult to pin-point
the underlying reasons. Although racial-ethnic minorities in the US are
associated with financial deprivation, financial indicators did not
explain the disparity in utilization of psychiatry services at
DF/BCH6. This suggests other utilization or
suitability factors were at play. Such factors may include stereotypical
beliefs, attitudes, or practices in the interactions between minorities
and health providers that negatively influence clinical decision-making
and effectiveness7. In this case such stereotypes may
influence minority children’s or parents’ rapport with their oncology
providers and willingness of parents to report mental or behavior
symptoms, and oncologists’ suspicion and threshold to make a psychiatric
referral. Other practical social-cultural factors such as language
barriers can influence utilization of services even when foreign
language translators are used, particularly in the culturally sensitive
realm of mental illness and behavioral disorders8.
Research to identify and quantify these disparities and their underlying
mechanisms is critical to devise effective strategies that will overcome
the systemic dynamics that deter minority children from accessing
optimal cancer care. In the case of Zheng D.J. et al’s findings, it
would be very informative to determine the exact nature of the disparity
by evaluating whether, (1) minorities were genuinely less likely to
require a psychiatric consultation – a potential difference in disease
epidemiology, (2) minorities needed psychiatric services but were not
referred – suggesting inferior quality of care, (3) minorities were
referred but never followed through on the psychiatric referral – a
utilization problem. Mixed methods study designs that complement
quantitative data with qualitative insights and involving key players
(e.g., providers and minority patients in this case), can unveil
critical issues around usability and acceptability that often underly
under-utilization of services.
Global and US disparities in pediatric cancer care and outcomes
epitomize the public health adage that discovery of efficacious
biomedical interventions does not automatically translate into improved
health services and outcomes for those that need them. Whereas many
pediatric oncology researchers are acutely aware of the difficulty to
translate research innovations into bedside interventions (aka,“the valley of death”)9, most children/families
affected by cancer globally are on the wrong side of a pediatric
oncology “death canyon” – a complex milieu of financial,
social-cultural, business interests, and health systems barriers that
lie between them and the bedside (Figure 1). Enough scientific
technologies have made it to the bedside to cure them, but only a few
children can make it to the bed.
Research that bridges efficacious interventions and their delivery to
children with cancer is critically needed. In addition to dedicateddisparities research , hybrid designs that build disparity
questions in translational, clinical trials, and epidemiology research
are likely to be efficient and even more informative. This requires
broadening the scope of research teams and meticulous recruitment of
appropriate socio-demographic strata of research participants. For
global settings where the landscape of health systems infrastructure and
organization and social-cultural norms are very different,implementation research is urgently needed to innovate strategies
that will enhance the adoption of pediatric cancer best practices that
suit the local context.