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

Bogosian, A. ORCID: 0000-0003-1244-6387, Morgan, M. and Moss-Morris, R. (2019). Multiple challenges for people after transitioning to secondary progressive multiple sclerosis: a qualitative study. BMJ Open, 9(3), e026421. doi: 10.1136/bmjopen-2018-026421

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
Semistructured qualitative interviews at two time points a year apart. Interviews were analysed using inductive thematic analysis.

Setting
UK.

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.

Publication Type: Article
Additional Information: © Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
Subjects: R Medicine > RC Internal medicine
Departments: School of Health Sciences > Healthcare Services Research & Management
Date Deposited: 08 Jun 2020 14:30
URI: https://openaccess.city.ac.uk/id/eprint/24326
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