Objectives Transitioning to secondary progressive multiple sclerosis (SPMS) is demanding for both patients and healthcare professionals. The particular challenges and the ways patients cope are poorly understood. The present study examines what challenges people face when diagnosed with SPMS by exploring experiences of people who have transitioned recently (up to 5 years).
Design Semistructured qualitative interviews at two time points a year apart. Interviews were analysed using inductive thematic analysis.
Participants We interviewed 21 people at baseline and 17 participated in the follow-up interviews.
Results The majority of participants reported expecting to transition to SPMS, and the diagnosis did not make much difference to them. Participants described increasing emotional and physical challenges after transitioning to SPMS and between the first and second interviews. Planning, using distractions and maintaining social roles helped participants cope with the increased challenges. The same coping strategies were used between the two interviews. Participants felt there was not much left to do regarding the management of their symptoms. A key theme was the sense of abandonment from healthcare services after transitioning to SPMS.
Conclusions After transitioning to SPMS, people are faced with multiple challenges. Participants described a lack of directions for symptoms management and lack of support from the healthcare system. An integrated multidisciplinary healthcare approach is crucial at the progressive stage of the disease to alleviate feelings of helplessness and promote symptom management.
- secondary progressive
- Multiple Sclerosis
- qualitative research
- health services
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Contributors AB and RM-M designed the study. AB conducted the interviews, led the data analysis and drafted the manuscript. MM contributed to the development of the topic guide, oversaw data collection and analysis and contributed to drafts of the paper. RM-M advised on the conduct of the research, contributed towards refining themes, interpretations of the findings, and drafts of the paper.
Funding Multiple Sclerosis UK supported this work under grant reference 4.
Competing interests None declared.
Ethics approval The current study was approved by the West of Scotland Research Ethics Committee (14/WS/0077).
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Paper trail and NVivo coding files are available from the corresponding author.
Patient consent for publication Obtained.
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