Neuropsychological evaluation and rehabilitation in multiple sclerosis

Other measures (1)

Background and study aims Problems with memory, attention, and problem solving (together known as ‘cognitive’ problems) affect up to 70% of people with multiple sclerosis (MS). These problems are distressing for people with MS, affecting their mood, ability to work, and enjoy social activities. Therefore, treating cognitive problems is a ‘top 10’ research priority for people with MS. The NEuRoMS (Neuropsychological Evaluation and Rehabilitation in Multiple Sclerosis) project aims to develop a clinical pathway, to routinely assess people with MS for cognitive problems using brief, online tasks (cognitive screening) and provide appropriate support to help them manage these problems. In this smaller study, the researchers will investigate what potential benefits and issues people with MS who undergo neuropsychological screening and rehabilitation intervention encounter, to identify any barriers/facilitators to delivery of the screening and management pathway and the intervention. Who can participate? People with MS: aged 18 or over who received neuropsychological screening and mild cognitive problems identified Related informants: relative, friend or carer supporting a person with MS, aged 18 or over Clinicians: health professionals (e.g., neurologists, MS nurse specialists, psychologists, occupational therapists) delivering the NEuRoMS screening and management pathway to people with MS Intervention providers: assistant psychologists or research nurses delivering the intervention to people with MS as part of the study What does the study involve? Participants will be identified through MS Clinics at three NHS sites. The current study will recruit ten people with multiple sclerosis who receive a brief online neuropsychological screening and are identified as having mild cognitive problems. These participants will be offered the NEuRoMS intervention (cognitive management programme) during a discussion of their screening results with a member of their clinical team (MS nurse, neurologist, occupational therapist (OT), or physiotherapist). Upon completion of the NEuRoMS intervention, a member of the research team will conduct semi-structured interviews with people with multiple sclerosis and their related informants (families/carers/friends). Clinicians and intervention providers involved in delivering the screening and management pathway will also be interviewed. Interviews will mostly be conducted over the phone/videoconferencing. Data will be analysed to inform: (i) understanding of people with multiple sclerosis’ experiences of receiving the intervention, (ii) the refinement of the screening and management pathway, (iii) the revision of programme theory. What are the possible benefits and risks of participating? It is not known whether the study will have a direct benefit to participants, but participating may help other people with MS in the future. The information obtained from this study will help the researchers decide how to develop the cognitive screening and management programme further in the hope of providing standardised screening and support for cognitive problems in MS. When talking about experiences and issues associated with cognitive problems, people may feel upset. This may also cause some concerns about their own cognitive abilities. If this happens during the intervention or interview, the therapist/researcher will be there to talk to through these concerns. Participants will have their contact information in case they feel upset after the session/interview for reasons associated with participation. The interview, intervention sessions and any other aspect of participants’ involvement can stop at any time if they do not wish to continue. A possible disadvantage is that it may inconvenience people to attend a session in person or be available at a specific time during the day. Intervention sessions and interviews will be arranged at a time and date that is suitable for participants, and these can be conducted over the phone or videoconferencing (based on preference). Where is the study run from? This is a multicentre study conducted across three NHS sites in the UK with MS outpatient clinics: 1. Nottingham University Hospitals NHS Trust (UK) 2. Cardiff and Vale University Health Board (UK) 3. Barts Health NHS Trust (UK) When is the study starting and how long is it expected to run for? July 2017 to December 2022 Who is funding the study? National Institute for Health Research (NIHR) (UK) Who is the main contact? Prof. Roshan das Nair (Chief Investigator) roshan.dasnair@nottingham.ac.uk Dr Gogem Topcu (Programme Manager) gogem.topcu@nottingham.ac.uk