Preferences for survivorship education and delivery among Latino and non-Latino childhood cancer survivors and caregivers.

Abstract

To assess survivor and parent perceptions of the long-term survivor visit and preferences regarding accessing health information, survivorship education, and support networks in rural and metropolitan regions of Texas. Leveraging the multi-institutional Survivorship and Access to Care for Latinos to Understand Disparities (SALUD) cohort, we administered a 26-item bilingual survey to adult survivors of childhood cancer and parents of younger survivors. Characteristics and responses were compared between survivors vs. parents and Latinos vs. non-Latinos using a t test or Fisher exact test. Odds ratios for the outcomes of interest were calculated with 95% confidence intervals. We received 138 responses from 59 survivors and 79 parents of survivors treated at three Texas pediatric cancer hospitals/clinics. Parents were more likely than survivors to seek survivorship information from other survivors or parents of survivors (OR=6.32, 95% CI 1.78, 22.47), and non-Latinos preferred social media as an educational resource (OR=3.70, CI 1.58, 8.68). Survivors, particularly Latino survivors, preferred short videos as a mode of survivorship education delivery. Highest topic priorities for survivorship education were 'risk for second cancers' and 'diet, nutrition, and exercise.' All parents and survivors who rated survivor physical and mental health as 'fair' or 'poor' identified as Latino. These results highlight differences in perceived health status between Latino and non-Latino survivors and support the development of adapted survivorship education content to address the specific needs of Latino survivors. Implications for Cancer Survivors Results of this study suggest a need for survivorship educational materials in multiple formats and that are tailored to the style, content, language preferences, and health literacy status of the target population.