Associations Between Social Risk Factors and Advanced Childhood Cancer Care Quality and Experience

Key Message : Among caregivers of children with advanced cancer, care quality and experience may be inferior among those who report limited health literacy. Targeted interventions for families with limited health literacy are needed to improve the childhood advanced cancer care experience.

Abstract: Background/Rationale: Social risk factors, including household material hardship (HMH) and limited health literacy (LHL), are pervasive among families of children with cancer and may contribute to poor outcomes (1,2,3).

Objectives/

Purpose: We explored how caregiver-reported HMH and LHL influence advanced, or incurable, childhood cancer care quality and experience.

Methods/Approach: We analyzed cross-sectional, multi-center data from the “Pediatric Cancer Care Experience” (PACE) questionnaire, which enrolled caregivers of children with advanced cancer. We defined HMH as caregiver-reported difficulty with housing, food, utilities, and/or transportation and characterized number of HMH domains reported. We defined LHL as an affirmative response to at least one validated screening question. To capture care quality and experience, we employed three PACE subscales as outcomes of interest: therapeutic alliance, collaborative care, and prognostic communication/shared decision-making. We computed mean response scores for each subscale across the entire cohort. We used bivariate analyses to explore associations between HMH, caregiver LHL, and subscale scores.

Results: Among 158 caregivers, 56% were non-Hispanic White and 89% identified English as their first language. Over one-third experienced HMH, with 68% (n/N=40/59) reporting hardship in >=2 domains. The most common HMH domain was housing (32%). Thirty-eight percent reported LHL, with a higher frequency among caregivers who speak a first language other than English (p=0.010). Care quality and experience subscale scores did not vary significantly by HMH. However, caregivers reporting LHL had lower mean scores for all three subscales, compared with those who did not report LHL: therapeutic alliance [mean subscale score 4.51 (95% CI 4.37,4.66) vs. 4.78 (4.72,4.85)], collaborative care [4.55 (4.42,4.68) vs. 4.76 (4.68,4.83)], and prognostic communication/shared decision-making [4.13 (3.96,4.31) vs. 4.48 (4.39,4.58)]; p<=0.01 for all.

Conclusion/Implications: Care quality and experience were reduced in the setting of caregiver-reported LHL. Findings suggest that interventions to support families facing health literacy challenges may improve the advanced cancer care experience.

References: (1) Eche‐Ugwu, I. J., Orellana, L., Becker, D., et al. (2024). Household material hardship and distress among parents of children with advanced cancer: A report from the PediQUEST Response trial. Cancer, 130(20): 3540-3548.

(2) Bona, K., London, W. B., Guo, D., Frank, D. A., & Wolfe, J. (2016). Trajectory of material hardship and income poverty in families of children undergoing chemotherapy: a prospective cohort study. Pediatr Blood Cancer, 63(1): 105-111.

(3) Skipper KE, Wadhwa A, Li P, et al. (2025). Association Between Caregiver Health Literacy, Social Determinants of Health, and the Pediatric Oncology New Diagnosis Educational Experience. Pediatr Blood Cancer,72(11): e32014.