AHRQ Report on Disparities and Barriers to Pediatric Cancer Survivorship Care
Since the passage of the STAR Act in 2018, Children’s Cancer Cause has advocated for follow-through on a provision that called for an assessment of childhood cancer survivorship programs, to give the National Cancer Institute (NCI) the means of establishing best practices and definitive survivorship care standards. This process began to take shape last summer through the office of the Agency for Healthcare Research and Quality (AHRQ).
We are pleased to share that the AHRQ published the final report (called a Technical Brief) this month: Disparities and Barriers to Pediatric Cancer Survivorship Care. This is the first of three AHRQ survivorship reports called for under the STAR Act.
The report’s investigators examined a total of 110 studies addressing “disparities, barriers to survivorship care, proposed strategies, evaluated interventions, and ongoing studies in childhood cancer survivors.”
Key messages:
The Technical Brief “identified only 8 ongoing and 27 published studies evaluating interventions to alleviate disparities and reduce barriers to care.” Additional research and more funding opportunities are needed to examine disparities and barriers that are less frequently studied, as well as to evaluate strategies to improve survivorship care.
“The literature documents that pediatric cancer survivors are experiencing disparities in survivorship care. These survivors are likely at higher risk of poor long-term health outcomes, psychosocial distress, lower social and work productivity, and early mortality compared to other survivors.”
Few studies were found that were “specifically designed to ameliorate disparities among pediatric cancer survivorship care.”
More findings around barriers to care:
Barriers to care at the patient or caregiver level include (as outlined in the report): a lack of knowledge or knowledge gaps in the need for long-term survivorship care; inability to prioritize this care as they deal with other life needs; inadequate financial or employment resources; patient autonomy; cultural, language, and literacy challenges; and mistrust in providers and the medical community. One of the most frequently examined barriers is that survivors don’t recall or have never been told about the need for life-long survivorship care.
Barriers to care at the provider, health system, or payer level include (as outlined in the report): a lack of adequate resources to deliver needed care; geographic obstacles such as lack of adequate in-network providers and specialists required to address long term health outcomes; difficulty or lack of transitioning from pediatric to adult care; and knowledge gaps around issues of insurance coverage or reimbursement for complex services provided. Informants specifically discussed that payers may not be aware of follow-up care guidelines and/or recommended care for childhood cancer survivors, and this could lead to significant access barriers.
Content experts think there is very limited information in the literature assessing strategies to overcome barriers to survivorship care. Key Informants noted that older research isn’t reflective of the current US or childhood cancer survivorship populations, which limits its applicability or relevance. Reasons for lack of assessment include lack of data, heterogeneity of the childhood cancer survivor population, and lack of funding. The review found that few studies assess how to address barriers at the provider level, and AHRQ did not find any studies addressing barriers at the healthcare system or payer levels.
Proposed strategies for addressing barriers:
Children’s Cancer Cause sent a letter to AHRQ in November 2020 to offer comments on the early iteration of this work, and we shared our proposal for a Medicaid demonstration program that aims to address barriers to survivorship care (see: CAST Model). Our proposed model is one of 16 strategies included in this final report:
“The [CAST] model would address barriers to survivorship care including staffing capacity, electronic medical records, interoperability of medical records, and legal constraints regarding confidentiality. Furthermore, the Children’s Cancer Cause endorsed improving access to survivorship care via digital technology (e.g., telehealth, integration of existing survivorship platforms), improved data collection (e.g., focus on insurance, survivorship care planning, and longitudinal studies), and addressing barriers to clinical trial participation for survivors (e.g., required coverage for routine costs for those insured by Medicaid, alleviating the burden of incidental costs such as food, housing, and transportation).”
As outlined in the report, the primary themes identified by Key Informants for addressing barriers include:
“Improving dissemination and education of follow-up guidelines to primary care providers and payers”
Collaborating with other advocacy groups that focus on lifelong conditions spanning pediatrics to adulthood - such as diabetes - to increase awareness and resources
“Designing a risk-stratification tool for long-term surveillance”
Instituting health policy changes to improve provider support through education and reimbursement.
Future direction for research in barriers to survivorship care:
Of the 8 ongoing studies assessing strategies to reduce barriers to care, half are evaluating patient education, with the remaining divided among patient tools, access to care, and provider tools. There are no identified ongoing studies focused on “interventions on family members, health systems, or payers.”
AHRQ notes that with the STAR Act, “more innovative approaches” are possible, such as shared utilization of large data sources like the Childhood Cancer Data Initiative, use of advanced analytic techniques, and targeted interventions as all levels – patient, provider, health services and payer.
Next steps:
Most published childhood cancer survivorship research comes from the Childhood Cancer Survivor Study (CCSS), and this report notes that “while the CCSS is a robust cohort and has been instrumental in identifying the needs of pediatric cancer survivors, its generalizability to the overall population of childhood cancer survivors, including underrepresented groups, and those treated with more modern therapies is limited.” As a result, diverse samples of survivors, including adequate representation of racial and ethnic minorities, are needed to gain more insight into barriers experienced by populations that experience health disparities, and considerable support should be aimed at “funding creative ways to overcome these barriers, given the fragmented nature of the US healthcare system.”
Key Informants stressed that survival itself is closely associated with many of the same issues related to social determinants of health, so studies of survivors are already biased toward patients with more favorable social determinants. Therefore, “not until we address disparities at the primary cancer treatment level, does the picture of how to alleviate disparities and barriers to survivorship care become complete.”
Little is known about the long-term support roles of parents, families, caregivers, and local community members, meriting further examination to identify potential facilitators of care and how to “foster these protective relationships.”
Disparities by education or employment have been under-studied in this population, and “disparities by sexual identity or among gender minorities have not yet been studied” in any existing literature.
The report highlights the need to tailor interventions at the cultural and community level. Pilot projects to implement models of care are needed to determine feasibility. The report emphasizes using individual states as “policy laboratories.” This could be applicable to education efforts as well as for payer policies.