Exploring associations between household material hardship, parent/caregiver health literacy, and family-reported experience of advanced childhood cancer care.

363 Background: In families of children with cancer, household material hardship (HMH) and health literacy challenges are associated with increased parent distress and lower care satisfaction, respectively. We aimed to describe how HMH and health literacy challenges may influence the advanced childhood cancer care experience. Methods: We conducted a secondary analysis of data collected at 8 U.S. hospitals, using the “Pediatric Cancer Care Experience” (PACE) questionnaire, which was completed by parents/caregivers of children with advanced, or incurable, cancer. We defined HMH as self-reported difficulty with at least one of four domains (housing, food, utilities, and/or transportation) and further characterized the number of HMH domains (0, 1, or >2). We defined health literacy challenges as an affirmative response to at least one of two validated screening questions. To capture key elements of the care experience, we employed three subscales as our primary outcomes of interest: (1) therapeutic alliance, (2) collaborative care, and (3) prognostic communication and shared decision making. Each subscale was comprised of items from PACE with 5-point Likert responses. We computed mean response scores for each subscale across the entire cohort. We then conducted bivariate analyses to explore associations between HMH, parent/caregiver health literacy, and subscale scores. Results: Among 158 respondents, a majority were female (70%), non-Hispanic White (56%), and spoke English as their first language (89%). Over one-third (37%) experienced HMH, with hardship most often reported in >2 domains (n = 40/59, 68%). The most common HMH domain was housing (32%) followed by food (24%), utilities (18%), and transportation (10%). Thirty-eight percent of the cohort reported health literacy challenges, with a higher frequency among respondents who speak a first language other than English (p = 0.010). Care experience subscale scores did not vary significantly by HMH. However, respondents reporting health literacy challenges had lower mean scores for all three subscales, compared to respondents who did not report health literacy challenges: therapeutic alliance (mean subscale score 4.51 [95% CI 4.37, 4.66] vs. 4.78 [4.72, 4.85], p < 0.01), collaborative care (4.55 [4.42, 4.68] vs. 4.76 [4.68, 4.83], p = 0.01), and prognostic communication and shared decision making (4.13 [3.96, 4.31] vs. 4.48 [4.39, 4.58], p < 0.01). Conclusions: Care experience, as measured by PACE subscales characterizing therapeutic alliance, collaborative care, and prognostic communication and shared decision-making, did not vary significantly with HMH but was reduced in the setting of family-reported health literacy challenges. Findings suggest that interventions to support families facing health literacy challenges may improve the advanced cancer care experience.