Thompson, Bethany, das Nair, Roshan, Tickle, Anna, Evangelou, Nikos, Hall, Henrietta and Moghaddam, Nima
(2023)
Providing emotional support around the point of multiple sclerosis diagnosis (PrEliMS-2): A multiple single case series.
DClinPsy thesis, University of Nottingham.
Abstract
Introduction
Multiple Sclerosis (MS) is a neurological, progressive disease, for which there is no known cure. The diagnosis period generates a range of difficult emotional responses. Support around this time is crucial to longer-term coping with the disease, however it is not currently part of national service provision. A recent feasibility randomised controlled trial (PrEliMS-1) investigated how to provide this support using an Acceptance and Commitment Therapy (ACT) informed intervention, delivered by MS Nurse Specialists. No signals of efficacy were found however interview data suggests not all aspects of the intervention could be delivered. Therefore, we aimed to address this issue by having a Trainee Clinical Psychologist (TCP) deliver the intervention. Specifically, we were interested in (a) signals of efficacy of the PrEliMS intervention for improving the psychological impact of MS, (b) understanding possible mechanisms of change, (c) comparing signals of efficacy with PrEliMS-1, and (d) exploring potential improvements.
Method
We used a mixed-methods, multiple single case AB design to investigate the effectiveness of a four-session PrEliMS intervention, delivered as telephone-supported bibliotherapy. The principle primary outcome measure was the Multiple Sclerosis Impact Scale-Psychological Subscale (MSIS-Psy). Additional primary outcomes measures were Generalised Anxiety Disorder (GAD-7), Patient Health Questionnaire (PHQ-9) and the Comprehensive Assessment of Acceptance and Commitment Therapy Processes (CompACT-8). Primary outcome data were gathered weekly during both AB phases. Secondary outcomes were stress, MS-related self-efficacy, Health Related Quality of Life (HRQoL) and fatigue , and data gathered pre-, 1-week post- and 1-month post- intervention. Visual analysis, and reliable and clinically significant change informed analysis. Comparisons were also made with the original PrEliMS study. Participants were invited to a post-intervention feedback interview, which was analysed using framework analysis.
Results
Five participants, recently diagnosed with MS (<1 year), completed the intervention. All experienced improvements in MSIS-Psy and criteria were met to demonstrate systematic change in the psychological impact of MS, as a result of the intervention. A lack of change was observed in psychological flexibility; visual analysis revealed this varied considerably across the sample. Clinically significant levels of distress improved, except for one participant. Change in secondary outcomes was varied, with favourable results for stress and MS-related self-efficacy. Comparisons with PrEliMS-1 indicate promising signs of efficacy for TCP-delivered PrEliMS support. Overall, the intervention was experienced positively, although improvements were recommended to increase flexibility to the needs of people with MS.
Discussion
TCP-delivered PrEliMS is effective at improving the psychological impact of MS. Although the main aim of ACT is not symptom reduction, those presenting with clinical levels of distress are likely to benefit also. The change observed in outcomes, often in the absence of psychological flexibility, is not congruent with the positioning of psychological flexibility as a mediator of positive coping outcomes. Potentially, the measure used lacks sensitivity for people with MS in this context, or this outcome may not be important to the PrEliMS intervention. Our sample was also not representative of diversity and ethnicity within the wider MS population; therefore, findings are limited to pwMS who are white British and on average, 4-months post-diagnosis. Further testing is warranted to understand how we can strengthen effects observed, determine mechanisms of change in PrEliMS and increase representativeness of all demographics within samples.
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