NEuRoMS Work Package 2ii Qualitative Study
Research type
Research Study
Full title
Neuropsychological Evaluation and Rehabilitation in Multiple Sclerosis (NEuRoMS): Refining the screening and management pathway in routine clinical practice (Phase 1: Work Package 2ii Qualitative Study)
IRAS ID
276903
Contact name
Roshan das Nair
Contact email
Sponsor organisation
Nottinghamshire Healthcare NHS Trust
Duration of Study in the UK
0 years, 7 months, 31 days
Research summary
Summary of Research
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 neuropsychological evaluation pathway, to routinely screen/assess all people with MS for cognitive problems attending NHS MS clinics (see https://neuroms.org/ for more information). In this smaller study, we will implement the pathway in three test sites.We will recruit ten people with multiple sclerosis who received a brief online cognitive screen (set of tasks to help identify and manage cognitive problems) and were identified as having mild cognitive problems. These participants will be offered a newly designed, brief, support programme to help them manage their cognitive problems during a discussion of their screening results with a member of their clinical team (MS nurse, neurologist, occupational therapist (OT), or physiotherapist). The programme provides information and strategies (e.g., by teaching people how to better concentrate or remember things) to help people cope with their problems and prevent them from worsening.
Upon completion of four x 60minute support programme sessions (a combination of face-to-face and telephone delivery), a member of the research team will conduct semi-structured interviews with people with multiple sclerosis and their related informants (family member/ carer/ friend). Clinicians involved in delivering the screening and management pathway will also be interviewed. Interviews will mostly be conducted over the phone/ videoconferencing. Interview data will be analysed to inform: (i) understanding of people with multiple sclerosis’ experiences of receiving the intervention, (ii) refinement of the screening and management pathway, (iii) revision of the underlying programme theory.
Summary of Results
Why did we run the study? This study was part of NEuRoMS (Neuropsychological Evaluation andRehabilitation in Multiple Sclerosis; www.neuroms.org), a programme of research, which includesseveral smaller studies. NEuRoMS aims to improve our ability to detect and manage cognitive problemsin people with MS. NEuRoMS has developed a screening tool (a set of computerised tasks) to routinelymonitor all people with MS for cognitive problems, and offers a brief cognitive managementprogramme for those with mild cognitive problems. We gathered feedback through interviews to checkwhether our newly developed cognitive management programme was acceptable to people with MSand other stakeholders (for example, clinicians, related informants, intervention providers), and whetherany changes were needed to be made before the cognitive management programme could be deliveredby MS services. We interviewed 28 people in total: - 8 people with MS with mild cognitive problemswho received the cognitive screening and cognitive management programme - 5 related informants,who were family members or carers of the people with MS involved in the study - 12 clinicians(consultant neurologists, MS nurses, occupational therapists) who were involved in the clinical care ofthe people with MS at three NHS Trusts - 3 intervention providers (assistant psychologists) who deliveredthe cognitive management programme What did we learn? Screening: People with MS were able tocomplete screening online at home without needing any support or assistance from their clinical team.However, some of the related informants noted that other people with MS may struggle to use acomputer to access screening or may not own a computer, suggesting that not all people with MS willbe able to complete screening at home. Cognitive management programme: People with MS said thatthey found the cognitive management sessions beneficial. They also told us that some of the topicsdiscussed during sessions were overwhelming to people with MS, with discussions feeling rushed.Specifically, the section that looked at cognitive problems and setting individual goals. The suggestionwas to split this section over at least two sessions. Assistant psychologists also agreed that more timeshould be spent on setting goals during sessions. General feedback about the format and layout of thebooklet for people with MS included that there needed to be more space provided for making notes,and simplifying some of the diagrams. All people with MS were happy that they could choose how thesessions were delivered (videoconference, over the telephone or face-to-face) where possible due toCOVID-19 restrictions. Changes experienced: People with MS said that they had experienced changessince receiving the programme, which the related informants observed as well. For example: theystarted using a wider range of strategies to help with their cognitive problems that had been discussedduring the sessions; they became more aware of their cognitive abilities and limitations (e.g., need forpacing themselves, understanding the effect of fatigue on cognitive function, need to be more mindfuland in the moment, need for a more relaxed outlook). Screening and management pathway: Overall,clinicians said the cognitive screening and management pathway helped them to better support theirpatients by aiding both the identification and management of cognitive problems for people with MS.However, implementation of the pathway also highlighted some gaps in the MS NHS services, such aslack of time during appointments to discuss the cognitive screening results and the lack of psychologyservices to refer patients identified as needing more specialist support for mood or cognitive problems.What we have done with the results We have revised the screening and management pathway basedon the feedback we received. We have made the cognitive management programme not only suitablefor people with MS identified as having 'mild' cognitive problems, but also for those identified as having'moderate' cognitive problems. We have made changes to the structure of the cognitive managementsessions, so more time is spent on setting goals. We have also made improvements to the bigger studybased on what we have learnt so far. This study will assess the effectiveness of the cognitivemanagement programme.REC name
North West - Greater Manchester West Research Ethics Committee
REC reference
20/NW/0081
Date of REC Opinion
20 Apr 2020
REC opinion
Further Information Favourable Opinion