Skip to main content

Development and Evaluation of a Cognitive Rehabilitation Program for Persons with Multiple Sclerosis

Final Report Summary - MS COGNITIVE REHAB (Development and Evaluation of a Cognitive Rehabilitation Program for Persons with Multiple Sclerosis)

Multiple sclerosis (MS) is a progressive neurological disease that affects over 400 000 people living in the European Union (EU). Approximately 50 % of persons living with MS will experience clinical problems related to cognitive impairment during the course of their illness including disturbances in memory, attention, concentration, information processing, and executive functions (such as problem solving, and self-monitoring). MS-related cognitive impairments negatively affect many aspects of functioning and independent participation in everyday life. Cognitive impairments are also a critical factor in limiting workplace activities and determining vocational status among persons with MS and therefore can have important socio-economic implications.

Overall, research has shown that rehabilitation has positive effects on persons with MS by improving symptom management, functional abilities in daily activities, social integration, independence, health-related quality of life, and emotional well-being. Therefore, the aims of this study were to develop and examine the benefits of a group-based, cognitive rehabilitation programme in order to evaluate its clinical impact as an evidence-based intervention. In order to meet the aims of the study, the following steps were conducted:

1. development of a cognitive rehabilitation programme that incorporated professional recommendations and consumer needs;
2. evaluating the revised cognitive programme.

The development of the cognitive programme began with the administration of focus groups with persons with MS. Data was collected regarding participants experience with cognitive impairments, current cognitive intervention options offered to them, and their preferences regarding future cognitive treatments. 21 persons with MS (81 % female) participated in the focus groups. Participants mean age was 51.9 (SD = 10) and they had been living with MS for an average of 10.4 years (SD = 7.1). Most of the participants were working and they reported cognitive difficulties similar to what is reported in the literature. Particularly, participants were having difficulties with work and daily activities (such as shopping), as well as driving, leisure tasks and maintaining social relationships. Regarding their preferences for a cognitive intervention programme, participants expressed a need for cognitive interventions as part of their rehabilitation programmes. Participants identified the importance of practicing learned materials at home and requested that their caregivers not be included in the programme.

Following the focus groups, a work group of eight professionals with knowledge and expertise in MS, cognitive rehabilitation, and group interventions was assembled. The work group considered the focus group data and previous research to make its recommendations regarding the content and structure of the cognitive programme. Guided by the recommendations of the work group, the final version of the revised programme was completed and pilot tested on a group of five persons with MS. The cognitive rehabilitation programme, named 'Mind over matter: Learning to manage cognitive symptoms in MS', is an eight-week, group-based programme that incorporates self-management strategies to increase participant's knowledge regarding their cognitive changes and to teach them tools and strategies to manage their cognitive symptoms and difficulties. 'Mind over matter' included seven weekly sessions and an additional booster session delivered six weeks following the final session. Each session is two hours long and facilitated by an occupational therapist.

In the final phase of the study, the cognitive programme was evaluated with respect to outcomes and process. In order to execute this phase, a comprehensive review of available assessment tools and process evaluation procedures was conducted. As a result, a compiled battery of screening tools, functional evaluations, questionnaires, and outcome measures was created.

The cognitive rehabilitation programme was evaluated on 39 persons with MS who were recruited from two MS clinics in Israel. Both quantitative and qualitative data were collected prior to participation in the programme, immediately following the programme, and three months following the programme. The cognitive programme was evaluated by a mixed-methods approach using a randomly assigned, wait-list, control group design. Interim analysis of the data show that of the 39 people with MS who participated in the cognitive rehabilitation programme 72 % were female (n = 28) and the average age was 46.7 (sd = 11, range 23 - 65). The majority had above high school education (n = 32; 82 %) and were employed (n = 25; 64 %). Participants were living with MS for an average of 11.3 years (sd = 8.7; range 1 - 44) and the majority had relapsing remitting MS (n = 37; 95 %). The majority of the participants scored below average on the cognitive assessment battery indicating cognitive impairment in memory, learning and executive functioning. Outcome measures indicated that participants significantly improved their daily occupational performance and satisfaction with their performance as a result of the programme. Participants maintained this level of performance and satisfaction three months after the programme. Participants also showed a significant increase in general cognitive self-efficacy and self-efficacy in managing cognitive changes. Additional analysis regarding the use of cognitive management strategies and participation levels in daily activities following the programme is currently being conducted. In addition, analysis regarding the difference between the intervention group and the wait-list control group, and the long term impact of the programme will be evaluated. The process evaluation of the intervention shows that the majority of the participants completed at least five programme sessions and reported high levels of satisfaction with the programme.

The preliminary results of the study indicate that a self-management cognitive rehabilitation programme is suitable and can be beneficial for persons living with MS. Overall, following the programme participants reported increased ability to self-manage cognitive symptoms and increased levels of occupational performance in areas such as work, leisure activities and home care. These initial results have significant implications regarding independence, productivity and well-being among persons living with MS.

This study supports the incorporation of such programmes in other MS clinics in Europe offering cognitive rehabilitation for their clients. The cognitive programme and related procedures are available to the MS community and their health care providers.