Abstract
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: Semi-structured qualitative interviews at two time points a year apart. Interviews were analysed using inductive thematic analysis.
Setting: United Kingdom
Participants: We interviewed twenty-one people at baseline and seventeen 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 interview. 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 health care 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 health care approach is crucial at the progressive stage of the disease to alleviate feelings of helplessness and promote symptom management.
Design: Semi-structured qualitative interviews at two time points a year apart. Interviews were analysed using inductive thematic analysis.
Setting: United Kingdom
Participants: We interviewed twenty-one people at baseline and seventeen 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 interview. 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 health care 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 health care approach is crucial at the progressive stage of the disease to alleviate feelings of helplessness and promote symptom management.
| Original language | English |
|---|---|
| Article number | e026421 |
| Journal | BMJ Open |
| Volume | 9 |
| Issue number | 3 |
| Early online date | 8 Mar 2019 |
| DOIs | |
| Publication status | Published - 8 Mar 2019 |
Keywords
- health services
- Multiple Sclerosis
- qualitative research
- secondary progressive
- self-management
- transition