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.