Multiple challenges for people after transitioning to secondary progressive multiple sclerosis: a qualitative study

Area of Science:

• Neurology
• Patient Experience Research

Background:

• Transitioning to secondary progressive multiple sclerosis (SPMS) presents significant challenges for patients and healthcare providers.
• Understanding patient coping mechanisms during this transition is crucial but currently limited.

Purpose of the Study:

• To explore the challenges faced by individuals recently diagnosed with secondary progressive multiple sclerosis (SPMS).
• To investigate the coping strategies employed by patients transitioning to SPMS.

Main Methods:

• Qualitative study utilizing semistructured interviews with 21 participants at baseline and 17 at follow-up.
• Inductive thematic analysis was applied to interview data collected over two time points, one year apart.

Main Results:

• Most participants anticipated the SPMS transition, with the diagnosis itself having minimal initial impact.
• Participants reported escalating emotional and physical difficulties post-transition, with coping strategies like planning and social engagement remaining consistent.
• A significant theme was the perceived abandonment by healthcare services and a feeling of limited options for symptom management.

Conclusions:

• Individuals transitioning to SPMS encounter numerous challenges, including inadequate symptom management guidance and insufficient healthcare support.
• An integrated, multidisciplinary approach is essential during the progressive phase of MS to mitigate helplessness and enhance symptom control.