Experiences of receiving a diagnosis of multiple sclerosis: a meta-synthesis of qualitative studies.

PURPOSE: This meta-synthesis aimed to synthesise qualitative evidence on experiences of people with Multiple Sclerosis (MS) in receiving a diagnosis, to derive a conceptual understanding of adjustment to MS diagnosis. METHODS: Five electronic databases were systematically searched to identify qualitative studies that explored views and experiences around MS diagnosis. Papers were quality-appraised using a standardised checklist. Data synthesis was guided by principles of meta-ethnography, a well-established interpretive method for synthesising qualitative evidence. RESULTS: Thirty-seven papers were selected (with 874 people with MS). Synthesis demonstrated that around the point of MS diagnosis people experienced considerable emotional upheaval (e.g., shock, denial, anger, fear) and difficulties (e.g., lengthy diagnosis process) that limited their ability to make sense of their diagnosis, leading to adjustment difficulties. However, support resources (e.g., support from clinicians) and adaptive coping strategies (e.g., acceptance) facilitated the adjustment process. Additionally, several unmet emotional and informational support needs (e.g., need for personalised information and tailored emotional support) were identified that, if addressed, could improve adjustment to diagnosis. CONCLUSIONS: Our synthesis highlights the need for providing person-centred support and advice at the time of diagnosis and presents a conceptual map of adjustment for designing interventions to improve adjustment following MS diagnosis.Implications for RehabilitationThe period surrounding Multiple Sclerosis diagnosis can be stressful and psychologically demanding.Challenges and disruptions at diagnosis can threaten sense of self, resulting in negative emotions.Adaptive coping skills and support resources could contribute to better adjustment following diagnosis.Support interventions should be tailored to the needs of newly diagnosed people.

Neuropsychological evaluation and rehabilitation in multiple sclerosis (NEuRoMS): protocol for a mixed-methods, multicentre feasibility randomised controlled trial.

BACKGROUND: Cognitive problems affect up to 70% of people with multiple sclerosis (MS), which can negatively impact mood, ability to work, and quality of life. Addressing cognitive problems is a top 10 research priority for people with MS. Our ongoing research has systematically developed a cognitive screening and management pathway (NEuRoMS) tailored for people with MS, involving a brief cognitive evaluation and rehabilitation intervention. The present study aims to assess the feasibility of delivering the pathway and will inform the design of a definitive randomised controlled trial (RCT) to investigate the clinical and cost-effectiveness of the intervention and eventually guide its clinical implementation. METHODS: The feasibility study is in three parts. Part 1 involves an observational study of those who receive screening and support for cognitive problems, using routinely collected clinical data. Part 2 is a two-arm, parallel group, multicentre, feasibility RCT with a nested fidelity evaluation. This part will evaluate the feasibility of undertaking a definitive trial comparing the NEuRoMS intervention plus usual care to usual care only, amongst people with MS with mild cognitive problems (n = 60). In part 3, semi-structured interviews will be undertaken with participants from part 2 (n = 25), clinicians (n = 9), and intervention providers (n = 3) involved in delivering the NEuRoMS cognitive screening and management pathway. MS participants will be recruited from outpatient clinics at three UK National Health Service hospitals. DISCUSSION: Timely screening and effective management of cognitive problems in MS are urgently needed due to the detrimental consequences of cognitive problems on people with MS, the healthcare system, and wider society. The NEuRoMS intervention is based on previous and extant literature and has been co-constructed with relevant stakeholders. If effective, the NEuRoMS pathway will facilitate timely identification and management of cognitive problems in people with MS. TRIAL REGISTRATION: ISRCTN11203922 . Prospectively registered on 09.02.2021.

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.

Memory rehabilitation for people with multiple sclerosis.

BACKGROUND: Problems with cognition, particularly memory, are common in people with multiple sclerosis (MS) and can affect their ability to complete daily activities and can negatively affect quality of life. Over the last few years, there has been considerable growth in the number of randomised controlled trials (RCTs) of memory rehabilitation in MS. To guide clinicians and researchers, this review provides an overview of the effectiveness of memory rehabilitation for people with MS. OBJECTIVES: To determine whether people with MS who received memory rehabilitation compared to those who received no treatment, or an active control showed better immediate, intermediate, or longer-term outcomes in their: 1. memory functions, 2. other cognitive abilities, and 3. functional abilities, in terms of activities of daily living, mood, and quality of life. SEARCH METHODS: We searched CENTRAL which includes Clinicaltrials.gov, World Health Organization (The Whoqol) International Clinical Trials Registry Portal, Embase and PubMed (MEDLINE), and the following electronic databases (6 September 2020): CINAHL, LILACS, the NIHR Clinical Research Network Portfolio database, The Allied and Complementary Medicine Database, PsycINFO, and CAB Abstracts. SELECTION CRITERIA: We selected RCTs or quasi-RCTs of memory rehabilitation or cognitive rehabilitation for people with MS in which a memory rehabilitation treatment group was compared with a control group. Selection was conducted independently first and then confirmed through group discussion. We excluded studies that included participants whose memory deficits were the result of conditions other than MS, unless we could identify a subgroup of participants with MS with separate results. DATA COLLECTION AND ANALYSIS: Eight review authors were involved in this update in terms of study selection, quality assessment, data extraction and manuscript review. We contacted investigators of primary studies for further information where required. We conducted data analysis and synthesis in accordance with Cochrane methods. We performed a 'best evidence' synthesis based on the methodological quality of the primary studies included. Outcomes were considered separately for 'immediate' (within the first month after completion of intervention), 'intermediate' (one to six months), and 'longer-term' (more than six months) time points. MAIN RESULTS: We added 29 studies during this update, bringing the total to 44 studies, involving 2714 participants. The interventions involved various memory retraining techniques, such as computerised programmes and training on using internal and external memory aids. Control groups varied in format from assessment-only groups, discussion and games, non-specific cognitive retraining, and attention or visuospatial training. The risk of bias amongst the included studies was generally low, but we found eight studies to have high risk of bias related to certain aspects of their methodology. In this abstract, we are only reporting outcomes at the intermediate timepoint (i.e., between one and six months). We found a slight difference between groups for subjective memory (SMD 0.23, 95% CI 0.11 to 0.35; 11 studies; 1045 participants; high-quality evidence) and quality of life (SMD 0.30, 95% CI 0.02 to 0.58; 6 studies; 683 participants; high-quality evidence) favoring the memory rehabilitation group. There was a small difference between groups for verbal memory (SMD 0.25, 95% CI 0.11 to 0.40; 6 studies; 753 participants; low-quality evidence) and information processing (SMD 0.27, 95% CI 0.00 to 0.54; 8 studies; 933 participants; low-quality evidence), favoring the memory rehabilitation group.  We found little to no difference between groups for visual memory (SMD 0.20, 95% CI -0.11 to 0.50; 6 studies; 751 participants; moderate-quality evidence), working memory (SMD 0.16, 95% CI -0.09 to 0.40; 8 studies; 821 participants; moderate-quality evidence), or activities of daily living (SMD 0.06, 95% CI -0.36 to 0.24; 4 studies; 400 participants; high-quality evidence).  AUTHORS' CONCLUSIONS: There is evidence to support the effectiveness of memory rehabilitation on some outcomes assessed in this review at intermediate follow-up. The evidence suggests that memory rehabilitation results in between-group differences favoring the memory rehabilitation group at the intermediate time point for subjective memory, verbal memory, information processing, and quality of life outcomes, suggesting that memory rehabilitation is beneficial and meaningful to people with MS. There are differential effects of memory rehabilitation based on the quality of the trials, with studies of high risk of bias inflating (positive) outcomes. Further robust, large-scale, multi-centre RCTs, with better quality reporting, using ecologically valid outcome assessments (including health economic outcomes) assessed at longer-term time points are still needed to be certain about the effectiveness of memory rehabilitation in 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.

Self-help Acceptance and Commitment Therapy for Carers of People with Multiple Sclerosis: A Feasibility Randomised Controlled Trial.

Acceptance and Commitment Therapy (ACT) is an established psychological therapy, but its effectiveness for carers of people with multiple sclerosis (MS) experiencing carer-related strain has not been established. This study assessed the acceptability and feasibility of conducting a randomised controlled trial comparing ACT self-help, telephone-supported ACT self-help, and usual care. We describe a mixed-method, parallel three-armed feasibility randomised controlled trial. Participants were carers (i.e. caregivers) of people with MS. The self-help group received an ACT self-help text (covered over 8 weeks), the enhanced self-help group additionally received weekly telephone support. All participants completed questionnaires at baseline, 3-month, and 6-month post-randomisation, assessing carer strain, health-related quality of life, and ACT-related processes. A sample of participants was also interviewed. Twenty-four carers were randomised. Participants found the study procedures to be acceptable, but highlighted difficulties with the self-help text and timing of the intervention. An exploratory, group-level analysis indicated effectiveness for the enhanced self-help group on carer strain (consistent across both follow-ups), with convergent qualitative reports to support this. A full trial of ACT-based, telephone-supported self-help is warranted, including both the self-help and enhanced self-help design, following significant adaptions to the self-help itself. An internal pilot would, therefore, be recommended to further assess the feasibility after changes are incorporated.Trial registration: The trial was registered on ClinicalTrials.gov (NCT03077971).

Psychosocial adjustment to multiple sclerosis diagnosis: A meta-review of systematic reviews.

This meta-review aimed to synthesise evidence on psychosocial adjustment to multiple sclerosis, to identify available treatment models and services for recently diagnosed individuals, and to explore their effectiveness. MEDLINE, CINAHL, EMBASE, PsycINFO, Web of Science, Cochrane Database of Systematic Reviews and grey literature were searched to include systematic reviews on psychosocial adjustment in multiple sclerosis. Two reviewers independently screened and assessed the quality of the selected reviews. Data were synthesised using narrative approach. Overall, thirty systematic reviews were included (with ~131,813 people with multiple sclerosis). A variety of psychosocial factors were identified in relation to adjustment to multiple sclerosis. Seven theoretical models that underpinned the available services and ten different intervention categories (e.g. cognitive behavioural approaches, mindfulness) for adjustment to multiple sclerosis were identified. There was some evidence that these interventions improved quality of life and coping, however, the difference they could make to people's adjustment was inconclusive. It was also difficult to conclude whether these interventions were particularly effective with the newly diagnosed. There is some support for the effectiveness of adjustment interventions. However, there is a need to design and rigorously evaluate support programmes for newly diagnosed people with multiple sclerosis, specifically focusing on information and adjustment support.

Effectiveness of cognitive rehabilitation for people with multiple sclerosis: a meta-synthesis of patient perspectives.

While previous randomised controlled trials and meta-analyses offer only limited evidence for the effectiveness of cognitive rehabilitation, qualitative studies examining patient perspectives report more positive outcomes. This meta-synthesis of qualitative studies examined patient perspectives of cognitive rehabilitation for memory, attention, and executive function problems in people with multiple sclerosis. Using set eligibility criteria, we screened electronic databases, reference lists, and academic networks for relevant papers. Seven papers (195 participants) were selected. Two independent researchers conducted quality appraisals of papers. Data analysis, guided by the thematic synthesis approach, yielded six main themes. These suggested that patients benefitted from the group environment in rehabilitation. Cognitive rehabilitation facilitated the participants' reflection and awareness of their cognitive deficits, and was associated with increased knowledge and understanding of their illness. Increased strategy use was reported and associated with improvements in cognitive functioning and greater confidence and perseverance. Participants reported emotional and social improvements, and felt more optimistic. Overall, these changes had a positive impact on participants' quality of life. This synthesis of qualitative studies indicates that people with multiple sclerosis who experience cognitive deficits benefit from cognitive rehabilitation programmes. This finding must, however, be viewed in light of the limitations of this meta-synthesis. The meta-synthesis was registered in the PROSPERO database under CRD42017040148.

Home-based pre-surgical psychological intervention for knee osteoarthritis (HAPPiKNEES): a feasibility randomized controlled trial.

OBJECTIVE: To determine the feasibility of conducting a trial of a pre-surgical psychological intervention on pain, function, and mood in people with knee osteoarthritis listed for total knee arthroplasty. DESIGN: Multi-centre, mixed-methods feasibility randomized controlled trial of intervention plus usual care versus usual care. SETTING: Participants' homes or hospital. PARTICIPANTS: Patients with knee osteoarthritis listed for total knee arthroplasty and score >7 on either subscales of Hospital Anxiety and Depression Scale. INTERVENTION: Up-to 10 sessions of psychological intervention (based on cognitive behavioural therapy). MAIN MEASURES: Feasibility outcomes (recruitment and retention rates, acceptability of trial procedures and intervention, completion of outcome measures), and standardized questionnaires assessing pain, function, and mood at baseline, and four and six months post-randomisation. RESULTS: Of 222 people screened, 81 did not meet inclusion criteria, 64 did not wish to participate, 26 were excluded for other reasons, and 51 were randomized. A total of 30 completed 4-month outcomes and 25 completed 6-month outcomes. Modal number of intervention sessions completed was three (range 2-8). At 6-month follow-up, mood, pain, and physical function scores were consistent with clinically important benefits from intervention, with effect sizes ranging from small ( d = 0.005) to moderate ( d = 0.74), and significant differences in physical function between intervention and usual care groups ( d = 1.16). Feedback interviews suggested that participants understood the rationale for the study, found the information provided adequate, the measures comprehensive, and the intervention acceptable. CONCLUSION: A definitive trial is feasible, with a total sample size of 444 people. Pain is a suitable primary outcome, but best assessed 6 and 12 months post-surgery.

Reporting interventions in trials evaluating cognitive rehabilitation in people with multiple sclerosis: a systematic review.

OBJECTIVE: To determine the quantity and quality of description of cognitive rehabilitation for cognitive deficits in people with multiple sclerosis, using a variety of published checklists, and suggest ways of improving the reporting of these interventions. DATA SOURCES: A total of 10 electronic databases were searched, including MEDLINE, EMBASE, CINAHL and PsycINFO, from inception to May 2017. Grey literature databases, trial registers, reference lists and author citations were also searched. REVIEW METHODS: Papers were included if participants were people with multiple sclerosis aged 18 years and over and if the effectiveness of cognitive rehabilitation in improving functional ability for memory, attention or executive dysfunction, with or without a control group, was being evaluated. RESULTS: A total of 54 studies were included in this review. The reporting of a number of key aspects of cognitive rehabilitation was poor. This was particularly in relation to content of interventions (reported completely in 26 of the 54 studies), intervention procedures (reported completely in 16 of the 54 studies), delivery mode (reported completely in 24 of the 54 studies) and intervention mechanism of action (reported completely in 21 of the 54 studies). CONCLUSION: The quality of reporting of cognitive rehabilitation for memory, attention and executive function for multiple sclerosis, across a range of study designs, is poor. Existing reporting checklists do not adequately cover aspects relevant to cognitive rehabilitation, such as the approaches used to address cognitive deficits. Future checklists could consider these aspects we have identified in this review.

Home-administered pre-surgical psychological intervention for knee osteoarthritis (HAPPiKNEES): study protocol for a randomised controlled trial.

BACKGROUND: Knee replacement surgery reduces pain for many people with osteoarthritis (OA). However, surgical outcomes are partly dependent on patients' moods, and those with depression or anxiety have worse outcomes. Approximately one-third of people with OA have mood problems. Cognitive behavioural therapy (CBT), a psychological therapy, is recommended by the National Institute for Health and Care Excellence for improving mood. However, evidence for the effectiveness of CBT before knee surgery in improving pain, mood, and quality of life following this surgery for people with knee OA is lacking. METHODS/DESIGN: This is a multi-centre, mixed-methods feasibility randomised controlled trial to compare treatment as usual (TAU) plus a brief CBT-based intervention with a TAU-only control, for people with knee OA. We will recruit 50 patients with knee OA, listed for knee replacement surgery, with high levels of distress (assessed using a mood questionnaire), and who consent to take part. Participants will be randomly allocated to receive TAU plus intervention or TAU. Up to 10 sessions of CBT will be offered on an individual basis by a psychologist. The assessments and interventions will be completed before surgery. Repeat assessments at 4 and 6 months after randomisation will be sent and received by post. Two patient-partners will conduct feedback interviews with some participants to assess what aspects of the intervention were helpful or unhelpful, the acceptability of randomisation, the experience of being in a control group, and the appropriateness of the measures used. Interviews will be audio-recorded, transcribed, and analysed using the framework approach. We will examine the feasibility and acceptability of patient-partners conducting the interviews by also interviewing the patient-partners. DISCUSSION: Findings from this study will be used to design a definitive study that will examine the clinical and cost-effectiveness of the CBT intervention in improving patient outcomes following knee surgery. TRIAL REGISTRATION: Current Controlled Trials ISRCTN80222865; Date: 19 June 2014.