Purpose of Review
This Agency for Healthcare Research and Quality (AHRQ) Technical Brief was commissioned by the National Cancer Institute (NCI) to support the development of a research agenda associated with the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act. This Technical Brief provides an overview of the existing evidence and forthcoming research relevant to disparities and barriers for pediatric cancer survivorship care, outlines open questions, and offers concrete guidance for future research in a user-friendly format.
- In total, 110 studies were identified that addressed disparities, barriers to survivorship care, proposed strategies, evaluated interventions, and ongoing studies in childhood cancer survivors.
- Twenty-six studies assessed disparities in survivorship care. The most commonly examined sources of disparities impacting survivorship care were biological sex and insurance.
- Forty-seven studies assessed barriers to survivorship care at various levels and their impact on key outcome domains. The most frequently studied barriers were at the level of the patient and provider, and predominantly impacted outcomes in the care domain.
- Sixteen organizations have proposed strategies to address survivorship care, most frequently endorsing the presence of disparities and barriers to care, with variation in the level of detail of specific recommendations. We identified only 8 ongoing and 27 published studies evaluating interventions to alleviate disparities and reduce barriers to care.
- While research has addressed disparities and barriers to survivorship care for childhood cancer survivors, evidence-based interventions to address these disparities and barriers to care are sparse. Interventions at the patient level were most frequently evaluated and include raising awareness of the need for life-long survivorship care.
- Additional research and corresponding funding opportunities are needed to successfully study large and diverse survivorship cohorts representative of disparate subgroups, to examine less frequently studied disparities and barriers, and to evaluate suggested strategies to alleviate barriers that can lead to disparities
Objectives. Survival rates for pediatric cancer have dramatically increased since the 1970s, and the population of childhood cancer survivors (CCS) exceeds 500,000 in the United States. Cancer during childhood and related treatments lead to long-term health problems, many of which are poorly understood. These problems can be amplified by suboptimal survivorship care. This report provides an overview of the existing evidence and forthcoming research relevant to disparities and barriers for pediatric cancer survivorship care, outlines pending questions, and offers guidance for future research.
Data sources. This Technical Brief reviews published peer-reviewed literature, grey literature, and Key Informant interviews to answer five Guiding Questions regarding disparities in the care of pediatric survivors, barriers to cancer survivorship care, proposed strategies, evaluated interventions, and future directions.
Review methods. We searched research databases, research registries, and published reviews for ongoing and published studies in CCS to October 2020. We used the authors’ definition of CCS; where not specified, CCS included those diagnosed with any cancer prior to age 21. The grey literature search included relevant professional and nonprofit organizational websites and guideline clearinghouses. Key Informants provided content expertise regarding published and ongoing research, and recommended approaches to fill identified gaps.
Results. In total, 110 studies met inclusion criteria. We identified 26 studies that assessed disparities in survivorship care for CCS. Key Informants discussed subgroups of CCS by race or ethnicity, sex, socioeconomic status, and insurance coverage that may experience disparities in survivorship care, and these were supported in the published literature. Key Informants indicated that major barriers to care are providers (e.g., insufficient knowledge), the health system (e.g., availability of services), and payers (e.g., network adequacy); we identified 47 studies that assessed a large range of barriers to survivorship care. Sixteen organizations have outlined strategies to address pediatric survivorship care. Our searches identified only 27 published studies that evaluated interventions to alleviate disparities and reduce barriers to care. These predominantly assessed approaches that targeted patients. We found only eight ongoing studies that evaluated strategies to address disparities and barriers.
Conclusions. While research has addressed disparities and barriers to survivorship care for childhood cancer survivors, evidence-based interventions to address these disparities and barriers to care are sparse. Additional research is also needed to examine less frequently studied disparities and barriers and to evaluate ameliorative strategies in order to improve the survivorship care for CCS.
Mobley EM, Moke DJ, Milam J, Ochoa CY, Stal J, Osazuwa N, Bolshakova M, Kemp J, Dinalo JE, Motala A, Baluyot D, Hempel S. Disparities and Barriers to Pediatric Cancer Survivorship Care . Technical Brief No. 39. (Prepared by the Southern California Evidence-based Practice Center under Contract No. 75Q80120D00009.) Rockville, MD: Agency for Healthcare Research and Quality; March 2021. DOI: 10.23970/AHRQEPCTB39. Posted final reports are located on the Effective Health Care Program search page.