Objective:

To better understand the needs of patients living with generalized Myasthenia Gravis (gMG) and impacted by Social Determinants of Health (SDOH) challenges in terms of Patient Support Program (PSP) services to improve patient outcomes.  

Background:

SDOH challenges are factors of the environment or patients’ lives that affect health, functioning, and quality of life outcomes. 

Design/Methods:

Phase One – Qualitative research was conducted with 11 patients and 2 Patient Advocacy Groups (PAGs) to understand PSP awareness, experience, and unmet needs. Phase Two – Quantitative research was conducted with 38 patients, the majority were people of color, non-urban residents and low-income women.  We identified SDOH challenges, assessed current utilization of services and unmet needs for PSP services to be addressed through new offerings.  Phase three – Qualitative research was conducted with 11 Health Care Professionals (HCPs) to understand how they address SDOH challenges in treating patients with gMG. 

Results:

In Phase Two, four prioritized PSP solutions were identified: 1) Expand current PSP services, including a medication information hotline, symptom tracking app, and updated educational resources; 2) Develop a personalized "human touch", e.g., 1:1 patient mentoring program for people initiating treatment or experiencing medical complications; 3) Create an innovative giving strategy and establish a long-term financial commitment to support patients living with gMG, 4) Increase PAGs awareness of Nurse Case Manager services.  In Phase Three, we found most HCPs are not adequately trained to identify patients with SDOH challenges, have limited training on educating patients on gMG, and often depend on social workers and nurses for these tasks. 

Conclusions:

For patients living with gMG encountering SDOH challenges, there are opportunities to bolster PSP offerings to improve patient outcomes.  HCPs receive limited training on educating patients about potential solutions to SDOH challenges.