The experience of transitioning from relapsing remitting to secondary progressive multiple sclerosis: views of patients and health professionals

Emer O'Loughlin, Susan Hourihan, Jeremy Chataway, E Diane Playford, Afsane Riazi

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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.

Implications for Rehabilitation
The timing and delivery of preparatory education for patients about the transition to SPMS should be carefully considered.

Sufficient information and follow-up support following the reclassification of SPMS is crucial but sometimes lacking.

The importance of sensitive communication of the reclassification of SPMS was highlighted. MS Specialist health professionals may potentially benefit from training and support around communication of the reclassification of SPMS.

Given the potential negative psychological impact of the transition, the psychological wellbeing of the patients during the transition to SPMS should be monitored and responded to appropriately.
Original languageEnglish
Pages (from-to)1821-1828
Number of pages8
JournalDisability and Rehabilitation
Issue number18
Early online date16 Aug 2016
Publication statusPublished - 2017

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