Social Determinants of Health and Clinical Outcomes in Children With Cystic Fibrosis

Abstract

Rationale: Among children with cystic fibrosis (CF), clinical outcomes vary among genetically similar patients, in part due to the contributions of social determinants of health (SDOH). Changes to patient assistance programs and Medicaid re-enrollment requirements may further impact people affected by SDOH. This project aimed to identify socially vulnerable patients and evaluate the impacts of SDOH on clinical outcomes. Methods: From January to July 2023, SDOH questionnaires were distributed to families of children with CF at Riley Hospital for Children. Patients were categorized by SDOH vulnerability and associations with clinical outcomes were analyzed using the Chi-squared test of independence. Results: 193 screeners were analyzed: the mean age was 9.2 years; 53% were males, 2.6% identified as non-White race, 3.6% reported Hispanic ethnicity, 51.6% were enrolled in Medicaid, and 70.5% were taking either ivacaftor or elexacaftor-tezacaftor-ivacaftor (ETI), consistent with the overall CF Center population. Overall, 100 (51.8%) screened positive for at least one SDOH (SDOH+): 60 screened positive for 1, 25 for 2, and 13 for 3+ SDOH. Of the SDOH+ patients, 64% were affected by the medical needs of another family member, 30% by food insecurity, 28% by difficulties affording utilities or rent, 22% by transportation needs, 11% by housing, and 9% by medication costs. In addition, 16 (8.3%) reported being negatively affected by changes to patient assistance programs and 7 (3.6%) by difficulties with Medicaid re-enrollment; 12 (75%) and 3 (43%) of whom were SDOH+, respectively. Of those who were SDOH+, 62% received immediate social work intervention.Mean (SD) FEV1 among SDOH+ patients was 5.8 (5.2)% predicted lower than their 2022 mean, vs 3.5 (5.0)% lower for SDOH- patients, p=0.001. A higher proportion of SDOH+ patients were 35% predicted below their 2022 mean FEV1 (24% vs 13% for SDOH-, p=0.037) and to have been hospitalized for a pulmonary exacerbation in the prior 12 months (21% vs 10% for SDOH-, p=0.030). There were no differences in mean BMI percentile, CFRD, or P. aeruginosa. Conclusions: Half of our CF Center population that completed a questionnaire screened positive for at least one SDOH. Some of these were not previously known by the CF Center team and this information provided opportunities to support families. SDOH+ patients have benefited from support from the multidisciplinary team, which may have mitigated negative impacts on clinical outcomes of insurance/payment assistance program changes. We will continue to routinely track SDOH, and changes to patient assistance programs and Medicaid.