Outc-08. Implementing Social Determinant of Health Data Collection for Pediatric, Adolescent and Young Adult Neuro-Oncology Patients in the Clinical Trial Consortia Setting: Progress and Challenges

Abstract

Adverse social determinants of health (SDoH) are associated with decreased survival and increased long-term complications amongst pediatric and adolescent and young adult (AYA) neuro-oncology patients. These outcome disparities are in part due to inferior access to clinical trials and comprehensive, multidisciplinary care. SDoH including food insecurity, housing instability, inability to pay for utilities, and personal safety issues have been shown to negatively impact therapy adherence and exacerbate survival disparities. As such, efforts to improve health equity must include evaluating and addressing SDoH at diagnosis. Existing literature has been limited by a reliance on proxy measures of adverse SDOH such as neighborhood or census area-level socioeconomic status data, which poorly reflect individual circumstances. There is a complex interplay between neighborhood and personal socioeconomic status that has not been extensively studied and is poorly understood. In addition, socioeconomic status is only one component of SDoH. No validated tool currently exists to assess SDoH amongst pediatric and AYA cancer patients. It is imperative that multicenter clinical trials collect SDoH data to inform both trial design and interpretation of results. These data will be important to understanding and identifying patterns in tumor and toxicity incidence, as well as understanding the burden on families in adhering to trial therapies. Based on our previous work, we will present the importance of incorporating SDoH data collection within the clinical trial consortia setting. In addition, we will review the development of a comprehensive SDoH questionnaire and discuss facilitators and barriers to the incorporation of SDoH questionnaires into multicenter clinical trials and offer solutions based on our experience.