Social Determinants of Health (SDOH) in adults living with spinal muscular atrophy (SMA): results from a US claims database study

Topic:

Clinical Management

Poster Number: 191 M

Author(s):

Erin Welsh, Cure SMA, Schaumburg, IL, USA, Naseem Rad, MD, UW Medicine, Seattle, WA, USA, Margaret Chuang, PharmD, Biogen, Cambridge, MA, USA, Sarah M. England, PhD, Biogen, Inc., Ameur M. Manceur, Cytel Inc., Waltham, MA, USA, Kathryn Kern Jamison, Biogen, Cambridge, MA, USA

Background: SDOH are the conditions in which people are born, grow, work, and live that influence health outcomes. To understand barriers to SMA care in adults, this study analyzed US claims data in adults living with SMA, characterizing demographics, comorbidities, and SDOH variables.

Methods: This retrospective study descriptively analyzed Komodo Health PLAID insurance claims data and Experian SDOH data captured 01Jan2016 to 30Nov2024. Eligible patients (N=1080) were adults with: two SMA diagnoses >30 days apart; ≥12 months of health insurance before first diagnosis (index date); no amyotrophic lateral sclerosis diagnosis; and complete SDOH data.

Results: Most patients were female (61.2%), white (56.0%), aged 25-64 years (61.6%) and had commercial insurance (52.7%). The mean (standard deviation) Quan-Charlson Comorbidity Index score was 1.3 (2.1). Common comorbidities included hypertension (43.4%), anxiety (25.7%) and depression (20.1%). In the year before the first observed SMA diagnosis, patients had frequently experienced developmental delays in motor function (22.2%), hypotonia (15.9%) and dysautonomia (15.1%). More patients had received physical (41.1%) or occupational (15.6%) therapy than had received speech therapy (2.2%). Approximately one fifth had a household annual income of between $50,000 and $74,999 (US $2025) and the majority (85.1%) lived above the Federal Poverty level. Nearly half had received either college education (28.3%) or a bachelor’s degree (23.1%). Nearly all patients (93.1%) lived in a household with a vehicle, and half (52.6%) lacked public transportation within walking distance. Overall, 39.6%, 28.5%, 25.6%, and 38.8% of patients had a high-risk level regarding limited access to medication, access to care, housing instability, or food insecurity, respectively. The SDOH total risk level was high for 42.8% of patients.

Conclusions: These findings highlight the heterogeneity of SDOH variables in adults living with SMA. SDOH variables should be considered to support equitable access to care for patients with SMA.