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Disparities and Barriers for Pediatric Cancer Survivorship Care

Technical Brief Draft

Open for comment through Nov 4, 2020

This draft report is available in PDF only (Draft Technical Brief [2 MB]; Draft Appendixes [1.2 MB]). For additional assistance, please contact us.

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.

Key Messages

  • In total, 88 studies were identified addressing identified disparities, barriers to survivorship care, proposed strategies, evaluated interventions, and ongoing studies in childhood cancer survivors.
  • Of these, 26 assessed disparities in survivorship care (e.g., based on race or ethnicity, biological sex, or insurance coverage) in a range of domains and 33 studies assessed barriers to survivorship care at various levels (e.g., patient level, provider level).
  • Fifteen organizations have proposed strategies to address barriers to survivorship care. We identified only seven ongoing and 23 published studies evaluating interventions to alleviate disparities and reduce barriers to care.
  • Evidence of disparities and barriers to survivorship care exist for childhood cancer survivors but evidence-based interventions to address disparities and barriers to care are sparse. Additional research is needed to examine less frequently studied disparities and barriers, and to evaluate suggested strategies to alleviate barriers that lead to disparities in order to improve the survivorship care for pediatric cancer survivors.

Structured Abstract

Objectives. Survival rates for pediatric cancer have dramatically increased since the 1970s and the population of childhood cancer survivors (CCS) is projected to exceed 500,000 by 2020. 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 summarizes published peer-reviewed literature, grey literature, and key informant interviews to answer five guiding questions regarding disparities in the care of survivors, barriers to pediatric 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. We used the authors’ definition of CCS; where not specified, CCS included those diagnosed with any cancer prior to age 21. The grey literature strategy included a search of relevant professional and non-profit organizational websites and clinical practice guideline clearing houses. Key informants provided content expertise regarding published and ongoing research, and recommended approaches to fill identified gaps.

Results. At the time of the draft report we identified 26 studies that assessed disparities in survivorship care for CCS; 33 assessed barriers to survivorship care. 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 findings were supported in the published literature. Key informants indicated that providers, the health system, and payers are major sources of barriers to care; however, these barriers were reported in a small minority of studies. Fifteen organizations have outlined strategies to address disparities and barriers to pediatric survivorship care. Our searches identified only 23 published studies that evaluated interventions to alleviate disparities and reduce barriers to care. These predominantly assessed approaches that targeted patients. We found only seven ongoing studies that evaluated strategies to address disparities and barriers.

Conclusions. We found evidence of disparities and barriers to survivorship care for CCS, however significant gaps in the research field remain, particularly regarding evaluations of interventions. Additional research is needed to examine less frequently studied disparities and barriers and to evaluate ameliorative strategies in order to improve the survivorship care for pediatric cancer survivors.