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The experience of transitioning from relapsing remitting to secondary progressive multiple sclerosis : views of patients and health professionals
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O’Loughlin, Emer, Hourihan, Susan, Chataway, Jeremy, Playford, E. Diane and Riazi, Afsane (2017) The experience of transitioning from relapsing remitting to secondary progressive multiple sclerosis : views of patients and health professionals. Disability and Rehabilitation, 39 (18). pp. 1821-1828. doi:10.1080/09638288.2016.1211760 ISSN 0963-8288.
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Official URL: http://dx.doi.org/10.1080/09638288.2016.1211760
Abstract
Purpose: The majority of people with multiple sclerosis (pwMS) initially present with discreet periods of relapses followed by partial remission of symptoms (RRMS). Over time, most pwMS transition to secondary progressive MS (SPMS), characterized by a gradual accumulation of disability. This study aimed to explore the experiences, coping and needs associated with transitioning from RRMS to SPMS.
Method: Data were collected via semi-structured interviews with nine pwMS and seven specialist MS health professionals (HPs). Thematic analysis was used to analyze the data.
Results:Four major themes were identified: “Is this really happening?”; “Becoming a reality”; “A life of struggle”; and “Brushing oneself off and moving on.” Findings suggested a process of moving from uncertainty towards confirmation of one’s diagnostic label. Being reclassified with SPMS served as a turning point for many, and was accompanied by a range of cognitive, emotional and behavioral responses. The value of adequate information and support surrounding the transition, and the potential benefit of education and support for health professionals in relation to the transition were indicated.
Conclusions: Understanding pwMS’ experiences of the transition is essential if clinicians are to provide pwMS with appropriate support during the transition.
| Item Type: | Journal Article | ||||||||||
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| Divisions: | Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences > Social Science & Systems in Health (SSSH) Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School |
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| Journal or Publication Title: | Disability and Rehabilitation | ||||||||||
| Publisher: | Taylor & Francis Ltd. | ||||||||||
| ISSN: | 0963-8288 | ||||||||||
| Official Date: | 2017 | ||||||||||
| Dates: |
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| Volume: | 39 | ||||||||||
| Number: | 18 | ||||||||||
| Page Range: | pp. 1821-1828 | ||||||||||
| DOI: | 10.1080/09638288.2016.1211760 | ||||||||||
| Status: | Peer Reviewed | ||||||||||
| Publication Status: | Published | ||||||||||
| Access rights to Published version: | Restricted or Subscription Access | ||||||||||
| Date of first compliant deposit: | 30 January 2018 | ||||||||||
| Date of first compliant Open Access: | 16 August 2018 |
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