QL26
Patient-Centric Care in Primary Progressive Multiple Sclerosis: Importance of Factors Beyond Traditional Clinical Endpoints
Primary progressive multiple sclerosis (PPMS) is an uncommon and debilitating form of MS, for which there are currently no FDA-approved disease-modifying treatments. Compared with relapsing forms of MS, less is known about the overall experience of patients with PPMS with their illness, their experience of MS care and factors that may lead to improvement in overall care. An improved understanding of these factors is essential to effectively promote high-quality, patient-centric care.
Objectives:
To identify and characterize the treatment experience of patients with PPMS and to generate data to identify future outcomes important for improving quality of care in this population.
Methods:
Qualitative telephone interviews were conducted with adult patients (≥18 years) residing in the United States and with a self-reported diagnosis of PPMS within the last 10 years. Semi-structured interview guides were developed to identify and explore the most important and impactful patient-perceived outcomes for these patients. Data were coded and qualitatively analyzed using the constant comparative method to identify key themes.
Results:
Eighteen patients (17/18 female; mean age, 54 years) reported impacts on mobility, fine motor movements, pain, fatigue and mental health issues as their most debilitating symptoms. Nearly all patients reported leaving the work force and reducing participation in leisure activities due to symptoms, including pain and fatigue. Both MS symptoms and change in life circumstances (e.g. leaving the work force, lack of independence) appeared to be contributors to overall poorer mental health status. Experience of MS care was variable across the cohort, but patients provided with supportive services early on and throughout the delivery of care reported improved overall treatment and disease experience compared with those who were not.
Conclusions:
In this qualitative study, common symptom patterns, including fatigue and pain, were reported by most patients. Efforts to improve the quality of care for patients with PPMS, from diagnosis through treatment, should encompass care options that go beyond medications to equally address the psychological consequences of the disease as well as the clinical outcomes. These qualitative observations could provide insights into quality measures that are important for patients as well as potential endpoints for clinical trials and can aid in improving overall patient care.