Klein, Olga
(2019)
Cognitive problems in multiple sclerosis: a mixed methods study on the perceived effectiveness and service provision of cognitive rehabilitation.
PhD thesis, University of Nottingham.
Abstract
Introduction: Up to 70% of people with multiple sclerosis (MS) experience mild to moderate cognitive deficits in attention, memory, information processing speed, and executive functioning. Cognitive rehabilitation to address such deficits has emerged as a potential treatment approach, but the evidence regarding its effectiveness is mixed. It is also unclear how cognitive rehabilitation is currently delivered in the UK.
Aim: To examine the perceived effectiveness and provision of cognitive rehabilitation services for people with MS.
Methods: This mixed methods research comprised three studies. Study One was a meta-synthesis summarising findings of qualitative studies examining patient perspectives of the effectiveness of cognitive rehabilitation programmes. Study Two was a UK national survey examining the provision of cognitive treatment for people with MS from the perspective of healthcare professionals. Study Three used semi-structured interviews to investigate patient perspectives on the services they received for their cognitive problems: this study was embedded within a large, multi-centre randomised controlled trial (RCT). Participants from both the control and intervention groups of the RCT were interviewed to compare experiences.
Results: (1) In the meta-synthesis, findings from seven individual studies highlighted the perceived benefits of cognitive rehabilitation for people with MS. Participants reported benefits in cognitive function, improved mood and quality of their relationships, and felt the programmes helped them change their perceptions of having MS. The group component was specifically referred to as beneficial as it helped participants experience a sense of community and support. Participants reported cognitive, behavioural, emotional and social improvements, and felt more optimistic. Overall, these changes had a positive impact on participants’ quality of life. (2) Survey findings indicated that clinical pathways for assessing and managing cognitive problems varied greatly across the UK and were dependent on the individual healthcare professional’s expertise, available resources, and access to specialist services. Of 109 healthcare professionals who responded, fewer than 50% reported that they developed and implemented a cognitive rehabilitation plan and only 3% followed a manual. The Montreal Cognitive Assessment was the most widely used cognitive assessment tool. (3) In the interview study, five main themes were identified through analysis. Participants reported on the services they received for their cognitive problems before the trial and on their perceived cognitive changes. Participants in the intervention group reported on the perceived mechanism of change of cognitive function after the trial and highlighted possible improvements to the treatment. Participants from both the intervention and control groups stated additional reasons for adherence to the treatment and trial. Participants in the intervention group perceived having better cognitive functioning than the participants in the control group. Results suggested that people adopted habits and coping behaviours after participating in a group-based rehabilitation programme, which had a positive impact on daily functioning.
Conclusion: There is evidence that people with MS perceive cognitive rehabilitation programmes to have a positive impact on their wellbeing, daily activities, and cognitive functioning. In addition, all participants in the interview study recognised the importance of clinical services focusing on cognitive deficits in MS (i.e., offering cognitive rehabilitation). However, there were no UK-wide standard clinical pathways for the assessment and management of cognitive problems in people with MS. Cognitive rehabilitation was not routinely offered in practice. There is a gap between patient needs and current clinical practice. This is a concern for the management of people with MS and for the access to training for healthcare professionals to improve services, which will need to be addressed in future research.
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