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.

Overcoming adversity: Building a remote interdisciplinary neurorehabilitation service during the COVID-19 pandemic.

Background: The COVID-19 pandemic necessitated rapid change in neurorehabilitation delivery at the Defence Medical Rehabilitation Centre (DMRC), with a reduction in inpatient capacity. Aims and method: An interdisciplinary remote working group developed a novel neurorehabilitation telerehabilitation (TR) model. The plan, do, study, act (PDSA) model was used to develop and monitor activity in the changing pandemic context and to identify clinical outputs, key themes and learning points. Results: Eight PDSA cycles were performed, including video outpatient clinics, multidisciplinary team meetings, virtual ward rounds and TR for patients at home. Ten patients and 21 staff members provided feedback. Qualitative themes emerged including information technology, consultation environment, access to clinical notes and record keeping, clinical considerations, consent, patient and staff feedback, and feasibility. Conclusion: COVID-19 accelerated the implementation of TR at DMRC, allowing maintenance of service during lockdown. TR was acceptable to patients but placed a significant burden on staff. Practical suggestions for establishing a TR service are provided alongside challenges and limitations.

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.

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.

Cognitive rehabilitation for attention deficits following stroke.

BACKGROUND: Many survivors of stroke report attentional impairments, such as diminished concentration and distractibility. However, the effectiveness of cognitive rehabilitation for improving these impairments is uncertain.This is an update of the Cochrane Review first published in 2000 and previously updated in 2013. OBJECTIVES: To determine whether people receiving cognitive rehabilitation for attention problems 1. show better outcomes in their attentional functions than those given no treatment or treatment as usual, and 2. have a better functional recovery, in terms of independence in activities of daily living, mood, and quality of life, than those given no treatment or treatment as usual. SEARCH METHODS: We searched the Cochrane Stroke Group Trials Register, CENTRAL, MEDLINE, Embase, CINAHL, PsycINFO, PsycBITE, REHABDATA and ongoing trials registers up to February 2019. We screened reference lists and tracked citations using Scopus. SELECTION CRITERIA: We included controlled clinical trials (CCTs) and randomised controlled trials (RCTs) of cognitive rehabilitation for impairments of attention for people with stroke. We did not consider listening to music, meditation, yoga, or mindfulness to be a form of cognitive rehabilitation. We only considered trials that selected people with demonstrable or self-reported attentional deficits. The primary outcomes were measures of global attentional functions, and secondary outcomes were measures of attentional domains (i.e. alertness, selective attention, sustained attention, divided attention), functional abilities, mood, and quality of life. DATA COLLECTION AND ANALYSIS: Two review authors independently selected trials, extracted data, and assessed the risk of bias. We used the GRADE approach to assess the certainty of evidence for each outcome. MAIN RESULTS: We included no new trials in this update. The results are unchanged from the previous review and are based on the data of six RCTs with 223 participants. All six RCTs compared cognitive rehabilitation with a usual care control. Meta-analyses demonstrated no convincing effect of cognitive rehabilitation on subjective measures of attention either immediately after treatment (standardised mean difference (SMD) 0.53, 95% confidence interval (CI) -0.03 to 1.08; P = 0.06; 2 studies, 53 participants; very low-quality evidence) or at follow-up (SMD 0.16, 95% CI -0.23 to 0.56; P = 0.41; 2 studies, 99 participants; very low-quality evidence). People receiving cognitive rehabilitation (when compared with control) showed that measures of divided attention recorded immediately after treatment may improve (SMD 0.67, 95% CI 0.35 to 0.98; P < 0.0001; 4 studies, 165 participants; low-quality evidence), but it is uncertain that these effects persisted (SMD 0.36, 95% CI -0.04 to 0.76; P = 0.08; 2 studies, 99 participants; very low-quality evidence). There was no evidence for immediate or persistent effects of cognitive rehabilitation on alertness, selective attention, and sustained attention. There was no convincing evidence for immediate or long-term effects of cognitive rehabilitation for attentional problems on functional abilities, mood, and quality of life after stroke. AUTHORS' CONCLUSIONS: The effectiveness of cognitive rehabilitation for attention deficits following stroke remains unconfirmed. The results suggest there may be an immediate effect after treatment on attentional abilities, but future studies need to assess what helps this effect persist and generalise to attentional skills in daily life. Trials also need to have higher methodological quality and better reporting.