Social determinants of health screening in patients with neuromuscular diseases using the electronic health record


Clinical Management

Poster Number: T339


Carmen Leon, MD, University of Florida, David A Fedele, PhD, University of Florida, Alyssa Henry Proffitt, PA-C, University of Florida, Gina Killian, ARNP, University of Florida, Benjamin McCaffrey, B.S, University of Florida, Donna Green, University of Florida, Julie Berthy, DNP, University of Florida, Stephanie Salabarria, BHSc, University of Florida, Barbara Smith, PT, PhD, University of Florida, Carla Zingariello, DO, University of Florida, Jennifer Shifflet, PA-C, University of Florida, Matthew Gurka, PhD, University of Florida, Barry J Byrne, MD, PhD, University of Florida, Jennifer LeLaurin, PhD, University of Florida, Ramzi G Salloum, PhD, University of Florida

Background: While it is recognized that social determinants of health (SDoH) affect the outcomes of patients with chronic conditions, their impact on patients with neuromuscular diseases has been minimally evaluated. Electronic health records (EHR) offer an opportunity to screen for SDoH and identify needs.

Objective: The aim of the current quality improvement study was to implement the Epic® SDoH module in our center.

Methods: Providers at the UF Center for Neuromuscular and Rare Diseases completed the Epic® SDoH module with patients and caregivers as part of clinical care. Domains covered by the module include housing, food insecurity, mental health, and transportation. Patients aged 18 and up completed their own module.

Results: Between April and November 2023, 63 patients (42 caregivers) completed the module, representing 37% of patients seen. 40 patients (64%) had Duchenne/Becker muscular dystrophy, 5 (8%) had spinal muscular atrophy, 18 (28%) had other conditions. Of these patients, 53 (84%) were male, 40 (64%) were Non-Hispanic (NH) white, 10 (16%) were NH African-American, and 34 (54%) had Medicaid. Median age (range) was 10.27 years (0.22-22). Monthly completion rate progressively increased from 16% to 66% through Plan-Do-Study-Act cycles.
Among caregivers (n=42), 35.6% reported anhedonia over the last two weeks, 20% were at risk for depression (PHQ >1), 14% had financial strain risk, 12% had food insecurity, 9.5% reported transportation needs, and 9.5% had housing insecurity. Among adolescents (n=18), 33% reported feeling depressed or hopeless in the last two weeks, while 22% adolescents and 1/8 (12%) adults were at risk for depression. Six (10%) patients received interventions (referral to social work or mental health services) based on responses.

Conclussion: The SDoH module offers an opportunity to identify caregiver and patient needs at the point of care. Future work is needed to optimize screening in this population and offer personalized interventions.