Needs, experiences, and knowledge of people with primary progressive multiple sclerosis: a scoping review.

BACKGROUND: About 10–15% of people with multiple sclerosis (MS) have a primary progressive disease course (PPMS). The disease is often diagnosed with a delay and has a worse course than in relapsing MS. Furthermore, limited immunotherapeutic and management options exist. This results in a substantial physical and psychological burden for people with PPMS (pwPPMS). However, evidence on the lived experiences and needs of pwPPMS is scarce. To address this gap, we present a scoping review of studies that report on the needs, experiences, and knowledge of pwPPMS. METHODS: We performed a scoping review following the Arksey & O’Malley framework. We searched MEDLINE, EMBASE, PsycINFO, and PsyINDEX (up to March 15, 2025). We included primary research reporting on the needs, experiences, and knowledge of pwPPMS. RESULTS: From 4433 identified records, eight studies met our inclusion criteria. Of these, half were qualitative studies, two (25%) observational, and two (25%) mixed-method studies, conducted in Europe, the UK, and the US between 2011 and 2024. Identified themes across needs, experience, and knowledge were self-management and adjustment strategies, understanding emotional reaction to the disease, information and support, communication with health professionals, and healthcare resources and policies. CONCLUSION: Limited evidence is available on the needs of pwPPMS, and evidence on interventions to empower this population is missing. There is a need for a targeted research agenda to investigate and address the specific needs of pwPPMS from diagnosis communication throughout the disease course.