Cognitive assessment in multiple sclerosis clinical care: A qualitative evaluation of stakeholder perceptions and preferences

ABSTRACT

There is a growing consensus that cognitive assessments should form part of routine clinical care in Multiple Sclerosis (MS). However, what remains unclear is which assessments are preferred by “stakeholders” (including people with MS, family members, charity volunteers, clinicians, and healthcare commissioners), in which contexts, and in which formats. Therefore, the aim of this study was to collect and synthesize stakeholders’ perceptions of the assessments that are acceptable and feasible for routine administration in the UK healthcare system.

We interviewed 44 stakeholders and held one focus group (n = 5). We asked stakeholders about their experience with cognitive impairment and assessment and their views on how cognitive assessment could be implemented within routine clinical care.

Using framework analysis, we summarized three themes: the current cognitive screening situation; the suitability of commonly used assessments; and feasibility aspects, including modality and location of testing. All participants acknowledged that cognitive impairment could have a significant impact on the quality of life, but that assessment and monitoring are not routinely performed in clinics. Barriers and enablers were described, and most participants reported that brief, routine screening with tests such as symbol substitution was acceptable. Electronic, self-administration of cognitive screening would be beneficial in minimizing clinic attendance and staff time.

KEYWORDS:

• Multiple Sclerosis
• cognitive assessment
• neuropsychology
• qualitative

Disclosure statement

No potential conflict of interest was reported by the author(s). RdN is the Chair of the NIHR Research for Patient Benefit East Midlands Research Advisory Committee, and Chief Investigator of the NEuRoMS study. He has received funding to prepare and deliver lectures (speakers bureau) on cognitive rehabilitation in multiple sclerosis from Novartis and Biogen. NE has received lecture fees on MS including cognitive screening to MS neurologists and a lecture tour on diagnosis of MS (which included a section on cognition) from Biogen, and 6 monthly salary for research fellowship from Merck, and serves on the advisory board of Merck, Biogen, and Roche.

Additional information

Funding

This project is an independent research funded by the UK MS Society (grant number: 70) and the National Institute for Health Research (Programme Grants for Applied Research, Neuropsychological Evaluation and Rehabilitation in Multiple Sclerosis – Developing, evaluating and implementing a clinical management pathway (NEuRoMS), RP-PG-0218-20002). The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research, or the Department of Health and Social Care.