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

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.

Cognitive measures used in adults with multiple sclerosis: A systematic review.

Cognitive problems are common in people with Multiple Sclerosis (MS), and researchers and clinicians have used a vast array of measures to assess cognition. Our aim was to systematically identify cognitive measures routinely used in MS research, and outline their different uses. Previous recommendations of cognitive measures to use in MS have relied on expert consensus approaches. We believe this systematic review is a starting point for an evidence-based approach to recommend cognitive tests for use with people with MS. We systematically searched electronic databases using relevant search terms for studies that assessed cognitive functioning in MS (last search in February 2020). From 11,854 abstracts retrieved, based on title and abstract review, 2563 remained. Data were extracted from 1526 studies. Studies used 5665 measures of cognition, with 316,053 people with MS. Substitutional style tests, serial addition tests, and word list learning tests were the most commonly used individual tests, and the Brief Repeatable Battery of Neuropsychological Tests was the most commonly used battery. Some of the most frequently used measures were potentially inappropriate due to measuring irrelevant domains of cognition, and issues with sensitivity. Further research is needed to ascertain the psychometric properties, and acceptability of measures for people with MS.

Developing a clinical pathway to identify and manage cognitive problems in Multiple Sclerosis: Qualitative findings from patients, family members, charity volunteers, clinicians and healthcare commissioners.

BACKGROUND: Cognitive problems are a common and debilitating symptom of multiple sclerosis (MS). Screening and treatment for cognitive problems are recommended, however these are not routinely delivered in UK clinics. We collected and synthesised stakeholder perspectives to develop a care pathway for cognitive problems in MS and produce a logic model, illustrating how this pathway might operate. METHODS: Forty-nine stakeholders, including people with MS and care providers, participated in semi-structured interviews and focus groups. Participants viewed information that illustrated how the pathway might work and provided feedback. Data, transcribed verbatim and analysed using Framework Analysis, were mapped onto a preliminary logic model and accompanying thematic framework. RESULTS: The proposed pathway was perceived as helpful in providing standardised support for a neglected MS symptom. Training packages, online cognitive screening, and triaging decisions were viewed as crucial activities. Shared responsibility, a person-centred approach, and addressing the complexity of cognitive problems were important engagement mechanisms. Allocating time during clinic appointments and within staff workloads were essential resources for implementation. CONCLUSION: Our co-constructed MS cognitive screening and management pathway will be evaluated for clinical and cost-effectiveness in a trial. However, in the interim, clinicians can adapt and implement this pathway in their own services and evaluate it locally.

Development and psychometric validation of the intermittent self-catheterization questionnaire.

BACKGROUND: Intermittent catheterization, often performed by the users themselves and known as intermittent self-catheterization (ISC), has become the gold standard treatment for people with chronic urinary retention. To date, there are no validated patient-reported outcome measures for individuals who rely on ISC that focus on ISC-related quality of life and can help health care professionals and catheter users to optimize long-term ISC care. OBJECTIVE: The objective of this study was to develop and validate a patient-reported outcome measure, the Intermittent Self-Catheterization Questionnaire (ISC-Q), which evaluates aspects of quality of life specific to the needs of individuals performing ISC. METHODS: This study was divided into 2 phases. The first phase focused on the development of the ISC-Q using 20 interviews and a review of selected literature. In addition, 10 interviews with UK and French individuals who performed ISC were conducted to ensure face and content validity of the ISC-Q. In the second phase of the study, the ISC-Q was administered online in the United Kingdom, France, and Germany to 306 individuals with neurologic urinary retention (including spinal cord injury, multiple sclerosis, and spina bifida), who performed ISC for at least 6 months, and were aged 18 to 85 years. Item reduction, reliability, and validity testing were performed to determine the psychometric properties of the ISC-Q. Responsiveness and minimum important differences were also examined. RESULTS: The initial phase of the study led to the development of a 4-domain instrument focusing on ease of use, convenience, discreetness, and psychological well-being. Various item reduction techniques were used that resulted in the removal of 3 items from the ISC-Q; there were 24 items in the final version. The conceptual framework of the ISC-Q was confirmed with a four-factor solution of the subscales. The ISC-Q was psychometrically robust, with excellent internal consistency, adequate test-retest reliability, and good validity (convergent and known groups validity). Overall, the responsiveness results show the ISC-Q to be sensitive to change, and the total ISC-Q minimum important difference estimates ranged from 4.94 to 8.73. CONCLUSION: The findings illustrate the ISC-Q to be a valid and reliable outcome measure that evaluated aspects of ISC-related quality of life.