Outcome disparities among survivors of hematologic malignancies diagnosed in childhood

Abstract Introduction: Latinos are a rapidly growing population in the Southwest U.S. Evidence has suggested population-based differences in childhood cancer outcomes, but studies and cohorts that inform both late effects risk and survivorship practice guidelines are limited by low proportions of non-White participants. The Texas-based multi-institutional Survivorship and Access to Care for Latinos to Understand health outcome Differences (SALUD) cohort (NCI UG3/UH3 CA260607) was established as a prospective cohort study to address the gap in understanding of the contribution of demographic, sociocultural, environmental, genetic, and molecular factors that influence childhood cancer survivor outcome disparities. While the SALUD cohort is inclusive of all childhood cancers, here we report results in survivors who completed treatment for a hematologic malignancy. Methods: The 37-item survey was conducted in survivors of leukemia and lymphoma diagnosed in childhood/adolescence who had completed cancer treatment and were in remission. The survey was designed to assess health behaviors and facilitators and barriers to accessing survivorship care, with plans to collect follow-up qualitative data in a series of focus groups. Respondents were seen in one of six participating pediatric oncology facilities/programs: El Paso Children's, Dallas Children's, Cook Children's (Ft. Worth, TX), Christus Children's (San Antonio, TX), Texas Children's (Houston, TX), and the Vannie Cook Children's Clinic (McAllen, TX). Survey responses were scored on a Likert scale, and odds ratios (OR) and confidence intervals (CI) for outcomes of interest were estimated by survivor ethnicity using a Fisher Exact test. Results: Between 1/1/21 and 6/3/25, 654 survivors (n=289) or parents of survivors (n=365, responding on behalf of their 18 year old child) completed the survey. Ninety respondents completed the survey in Spanish, and 60% of survivors self-identified as Latino. Survivors represented were 47.4% female and included 500 survivors of acute leukemia and 154 survivors of lymphoma. The self-reported race distribution was 0.3% Native Hawaiian, 1.8% American Indian/Alaska Native, 3.8% Asian, 5.8% Black, and 80% White, with the remainder preferring not to answer. At the time of survey completion, the mean survivor age was 15.2 years, median 15 years (range 3.4 to 47.4 years) and the mean duration off therapy was 5.98 years, median 4.52 years (range, 0 to 38.4 years). Nearly 14% of survivor respondents stated they had not established care with a primary care provider and 21.7% had not seen their PCP in the past year. Survivors under the age of 18 years were 10.7 times more likely to have a PCP (CI 6.3, 18.1) vs. adult survivors. Of those that had a PCP, only 14% expressed low or very low confidence in their PCP's ability to manage their risk for treatment late effects and need for screening. Latino survivors were more likely to endorse very high confidence in their PCP for survivorship care (OR 1.4, CI 1.0, 2.0) and were also more likely to have seen a PCP in the past year, vs. non-Latinos (OR 1.8, CI 1.2, 2.6). Regarding health status in the past 3 months, 90.8% of survivors reported their health as good, very good, or excellent, but 27.1% reported having at least one health problem diagnosed since their cancer treatment. Latino survivors were more likely to report their recent health as ‘fair’ or ‘poor’ vs. non-Latinos (OR 3.0, CI 1.5, 6.0). Ten percent of survivors reported being underinsured or uninsured as a significant barrier to obtaining survivorship services and 12.3% of survivors lived more than 100 miles away from the closest pediatric oncology facility. Black and Latino survivors were more likely to report health insurance as a barrier vs. other populations (OR 1.8, CI 1.2, 2.7).Conclusion: Survivors of hematologic malignancies diagnosed in childhood are at risk for late effects of cancer treatment and require lifelong survivorship care. In this predominantly Latino cohort, we observed population-based disparities in reported health outcomes and identified substantial barriers to accessing survivorship services. Trust in PCPs, especially among Latinos, suggests that leveraging community partnerships in a shared care model presents an opportunity for improving access to survivorship services. Given our approach of clinic-based survey distribution, our results suggest even greater gaps in care may exist among survivors who are lost to follow-up.