Health‐Related Social Needs in Children With Sickle Cell Disease Are Associated With Worse Health‐Related Quality of Life

BACKGROUND: Children with sickle cell disease (SCD) face multiple acute and chronic medical complications that may impact their quality of life as reported by patients themselves. Health-related social needs (HRSNs), such as food and housing insecurity, are common in people with SCD, but the association between HRSNs and patient-reported quality-of-life outcomes in pediatric SCD patients has not been examined. METHODS: In this cross-sectional study, parents/guardians of children 5-18 completed a demographic questionnaire, an HRSN screener, and the PROMIS Pediatric Parent-Proxy 25 Profile v2.0, while children 8 and older completed the PROMIS Pediatric-25 Profile v2.0 during routine SCD clinical appointments. To examine the association of HRSN and the six PROMIS domains reported by both parents/guardians and children, we looked at unadjusted descriptive statistics as well as fit-nested linear regression models that adjusted for clinical and demographic characteristics. RESULTS: Respondents included 81 parents/guardians and 64 children. Generally, across multiple domains, children with at least one parentally reported HRSN evidenced worse clinically significant quality of life, with guardians reporting greater differences than children. These differences persisted even when accounting for the child's age, gender, SCD genotype, and acute care utilization in the past 12 months. CONCLUSIONS: HRSNs are associated with worse patient-reported quality-of-life outcomes in a pediatric SCD population, even after accounting for patient and demographic factors. These findings underscore the need for routine HRSN screening in clinics and support the development of systematic referral pathways to community resources to address identified needs.