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Publisher: Informa UK Limited
Date: 07-03-2022
DOI: 10.1080/09638288.2022.2046187
Abstract: 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. 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. 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. 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.
Publisher: BMJ
Date: 09-2019
DOI: 10.1136/BMJOPEN-2018-028711
Abstract: To measure the clinical, structural and functional changes of an in idualised structured cognitive rehabilitation in mild traumatic brain injury (mTBI) population. A single centre study, Malaysia. Adults aged between 18 and 60 years with mTBI as a result of road traffic accident, with no previous history of head trauma, minimum of 9 years education and abnormal cognition at 3 months will be included. The exclusion criteria include pre-existing chronic illness or neurological sychiatric condition, long-term medication that affects cognitive sychological status, clinical evidence of substance intoxication at the time of injury and major polytrauma. Based on multiple estimated calculations, the minimum intended s le size is 50 participants (Cohen’s d effect size=0.35 alpha level of 0.05 85% power to detect statistical significance 40% attrition rate). Intervention group will receive in idualised structured cognitive rehabilitation. Control group will receive the best patient-centred care for attention disorders. Therapy frequency for both groups will be 1 hour per week for 12 weeks. Primary: Neuropsychological Assessment Battery-Screening Module (S-NAB) scores. Secondary: Diffusion Tensor Imaging (DTI) parameters and Goal Attainment Scaling score (GAS). Results will include descriptive statistics of population demographics, CogniPlus cognitive program and metacognitive strategies. The effect of intervention will be the effect size of S-NAB scores and mean GAS T scores. DTI parameters will be compared between groups via repeated measure analysis. Correlation analysis of outcome measures will be calculated using Pearson’s correlation coefficient. This is a complex clinical intervention with multiple outcome measures to provide a comprehensive evidence-based treatment model. The study protocol was approved by the Medical Research Ethics Committee UMMC (MREC ID NO: 2016928–4293). The findings of the trial will be disseminated through peer-reviewed journals and scientific conferences. NCT03237676
Publisher: Informa UK Limited
Date: 03-05-2021
DOI: 10.1080/09602011.2021.1899942
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 (
Publisher: SAGE Publications
Date: 12-04-2022
DOI: 10.1177/02692155221091509
Abstract: To establish the effectiveness of relaxation and related therapies in treating Multiple Sclerosis related symptoms and sequelae. PsycINFO, PubMed, Embase, CINAHL, ProQuest Dissertations and Theses Global databases were searched. We included studies from database inception until 31 December 2021 involving adult participants diagnosed with multiple sclerosis or disseminated sclerosis, which featured quantitative data regarding the impact of relaxation interventions on multiple sclerosis-related symptoms and sequelae. Studies which examined multi-modal therapies - relaxation delivered in combination with non-relaxation interventions - were excluded. Risk of bias was assessed using the Revised Risk of Bias tool for randomised trials - ROB2, Risk of Bias in Non-Randomised Studies of Interventions ROBINS-I), and within and between-group effects were calculated (Hedges' Twenty-eight studies met inclusion criteria. Twenty-three of these were randomised controlled trials, with 1246 total participants. This review reports on this data, with non-randomised study data reported in supplemental material. Post -intervention relaxation was associated with medium to large effect-size improvement for depression, anxiety, stress and fatigue. The effects of relaxation were superior to wait-list or no treatment control conditions however, comparisons with established psychological or physical therapies were mixed. In idual studies reported sustained effects (≤ 6 months) with relaxation for stress, pain and quality of life. Most studies were rated as having a high/serious risk of bias. There is emerging evidence that relaxation therapies can improve outcomes for persons with multiple sclerosis. Given the high risk of bias found for included studies, stronger conclusions cannot be drawn.
Publisher: SAGE Publications
Date: 2022
DOI: 10.1177/20556683221117759
Abstract: In iduals with acquired brain injury may find it difficult to self-manage and live independently. Brain-in-Hand is a smartphone app designed to support psychological problems and encourage behaviour change, comprised of a structured diary, reminders, agreed solutions, and traffic light monitoring system. To evaluate the potential use and effectiveness of Brain-in-Hand for self-management in adults with acquired brain injury. A-B mixed-methods case-study design. In iduals with acquired brain injury ( n = 10) received Brain-in-Hand for up to 12 months. Measures of mood, independence, quality of life, cognition, fatigue, goal attainment, participation administered at baseline, 6 and 12 months. Semi-structured interviews conducted with acquired brain injury participants ( n = 9) and healthcare workers ( n = 3) at 6 months. Significant increase in goal attainment after 6 months use (t(7) = 4.20, p = .004). No significant improvement in other outcomes. Qualitative data suggested improvement in anxiety management. Contextual (personal/environmental) factors were key in influencing the use and effectiveness of Brain-in-Hand. Having sufficient insight, appropriate support and motivation facilitated use. Brain-in-Hand shows potential to support acquired brain injury, but further work is required to determine its effectiveness. Context played a pivotal role in the effectiveness and sustained use of Brain-in-Hand, and needs to be explored to support implementation.
Publisher: SAGE Publications
Date: 12-04-2019
Publisher: Wiley
Date: 23-01-2023
DOI: 10.1111/HEX.13711
Abstract: Diagnosing multiple sclerosis (MS) can be a lengthy process, which can negatively affect psychological well‐being, condition management, and future engagement with health services. Therefore, providing timely and appropriate emotional support may improve adjustment and health outcomes. To develop a patient care pathway for providing emotional support around the point of diagnosing MS, and to explore potential barriers and facilitators to delivery and implementation. Focus groups were conducted with 26 stakeholders, including 16 people living with MS, 5 carers/family members and 5 professionals working with people living with MS (3 MS nurses, 1 psychiatrist, and 1 charity staff member). Discussions were audio‐recorded, transcribed verbatim and analyzed using framework analysis. Participants suggested that a patient care pathway should include comprehensive information provision as a part of emotional support at diagnosis, and follow‐up sessions with a healthcare professional. Barriers including increasing staff workloads and financial costs to health services were acknowledged, thus participants suggested including peer support workers to deliver additional emotional support. All participants agreed that elements of a care pathway and embedded interventions should be in idually tailored, yet provided within a standardized system to ensure accessibility. A patient care pathway was developed with stakeholders, which included an embedded MS Nurse support intervention supplemented with peer support sessions. Participants suggested that the pathway should be delivered within a standardized system to ensure equity of service provision across the country. This research was conceptualized and designed collaboratively with Nottingham Multiple Sclerosis Patient and Public Involvement and Engagement (PPIE) group members. One member is a co‐author and was actively involved in every key stage of the research process, including co‐design of the pathway and research protocol, data collection (including presenting to participants and moderating group discussions), analysis and write‐up. Authors consulted with PPIE members at two meetings (9 and 11 PPIE attendees per meeting) where they gave feedback on the research design, findings and the resulting pathway. People living with MS and carers of people with MS were included in the focus groups as participants.
Publisher: Springer Science and Business Media LLC
Date: 12-2015
Publisher: National Institute for Health and Care Research
Date: 04-2019
DOI: 10.3310/HTA23160
Abstract: People with traumatic brain injuries (TBIs) commonly report memory impairments. These are persistent, debilitating and reduce quality of life, but patients do not routinely receive memory rehabilitation after discharge from hospital. To assess the clinical effectiveness and cost-effectiveness of a group memory rehabilitation programme for people with TBI. Multicentre, pragmatic, cluster randomised controlled trial. Qualitative and health economic evaluations were also undertaken. Community settings in nine sites in England. Participants were aged 18–69 years, had undergone a TBI 3 months prior to recruitment, reported memory problems, were able to travel to a site to attend group sessions, could communicate in English and gave informed consent. Clusters of four to six participants were randomised to the memory rehabilitation arm or the usual-care arm on a 1 : 1 ratio. Randomisation was based on a computer-generated pseudo-random code using random permuted blocks of randomly varying size, stratified by study site. Participants and therapists were aware of the treatment allocation whereas outcome assessors were blinded. In the memory rehabilitation arm 10 weekly sessions of a manualised memory rehabilitation programme were provided in addition to usual care. Participants were taught restitution strategies to retrain impaired memory functions and compensation strategies to enable them to cope with memory problems. The usual-care arm received usual care only. Outcomes were assessed at 6 and 12 months after randomisation. Primary outcome: patient-completed Everyday Memory Questionnaire – patient version (EMQ-p) at 6 months’ follow-up. Secondary outcomes: Rivermead Behavioural Memory Test – third edition (RBMT-3), General Health Questionnaire 30-item version, European Brain Injury Questionnaire, Everyday Memory Questionnaire – relative version and in idual goal attainment. Costs (based on a UK NHS and Personal Social Services perspective) were collected using a service use questionnaire, with the EuroQol-5 Dimensions, five-level version, used to derive quality-adjusted life-years (QALYs). A Markov model was developed to explore cost-effectiveness at 5 and 10 years, with a 3.5% discount applied. We randomised 328 participants (memory rehabilitation, n = 171 usual care, n = 157), with 129 in the memory rehabilitation arm and 122 in the usual-care arm included in the primary analysis. We found no clinically important difference on the EMQ-p between the two arms at 6 months’ follow-up (adjusted difference in mean scores –2.1, 95% confidence interval –6.7 to 2.5 p = 0.37). For secondary outcomes, differences favouring the memory rehabilitation arm were observed at 6 months’ follow-up for the RBMT-3 and goal attainment, but remained only for goal attainment at 12 months’ follow-up. There were no differences between arms in mood or quality of life. The qualitative results suggested positive experiences of participating in the trial and of attending the groups. Participants reported that memory rehabilitation was not routinely accessible in usual care. The primary health economics outcome at 12 months found memory rehabilitation to be £26.89 cheaper than usual care but less effective, with an incremental QALY loss of 0.007. Differences in costs and effects were not statistically significant and non-parametric bootstrapping demonstrated considerable uncertainty in these findings. No safety concerns were raised and no deaths were reported. As a pragmatic trial, we had broad inclusion criteria and, therefore, there was considerable heterogeneity within the s le. The study was not powered to perform further subgroup analyses. Participants and therapists could not be blinded to treatment allocation. The group memory rehabilitation delivered in this trial is very unlikely to lead to clinical benefits or to be a cost-effective treatment for people with TBI in the community. Future studies should examine the selection of participants who may benefit most from memory rehabilitation. Current Controlled Trials ISRCTN65792154. This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment Vol. 23, No. 16. See the NIHR Journals Library website for further project information.
Publisher: Informa UK Limited
Date: 05-2019
DOI: 10.1080/09602011.2017.1309323
Abstract: 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.
Publisher: F1000 Research Ltd
Date: 25-08-2020
DOI: 10.12688/F1000RESEARCH.22880.2
Abstract: Background : Post-stroke fatigue (PSF) is one of the most common and frustrating outcomes of stroke. It has a high prevalence and it can persist for many years after stroke. PSF itself contributes to a wider range of undesirable outcomes that affect all aspects of daily life. The aim of this review was to identify and summarise the most recent research on PSF, in order to update the evidence base. Methods : We updated an existing review (Hinkle et al . 2017) systematically searching CINAHL, MEDLINE, PsycINFO, and PubMed to cover new research studies between 1 st March 2016 and the search date (19 th January 2020). We included interventional and observational research, and clinical practice guidelines that were not covered in the original review. After duplicate removal in EndNote, two reviewers screened the search results in Rayyan, and data from eligible full texts were extracted onto an Excel spreadsheet. Finally, we used RobotReviewer and a human reviewer to assess the risk of bias of randomised trials for this scoping review. Results : We identified 45 records for 30 studies (14 observational, 10 interventional studies, and 6 guidelines). Apart from one, the interventional studies were single-centred, had high risk of bias and small s le size (median 50). They investigated exercise, pharmacotherapy, psychotherapy, education, and light therapy. Observational studies mainly reported the factors related to PSF including co-morbidities, depression and anxiety, quality of life, activities of daily living, stroke severity, medication use and polypharmacy, polymorphism, pain, apathy, limb heaviness, neuroticism, mobility, and thyroid-stimulating hormone. Guidelines either did not report on PSF or, when reported, their recommendations were supported by little or low level of evidence. Conclusion : Although we identified a number of recent studies which have added to our current knowledge on PSF, none are robust enough to change current clinical practice.
Publisher: Informa UK Limited
Date: 13-06-2021
Publisher: Springer Science and Business Media LLC
Date: 11-06-2022
DOI: 10.1186/S40814-022-01073-5
Abstract: 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. 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. 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. ISRCTN11203922 . Prospectively registered on 09.02.2021.
Publisher: Informa UK Limited
Date: 17-02-2021
Publisher: Springer Science and Business Media LLC
Date: 30-05-2018
Publisher: Informa UK Limited
Date: 25-08-2021
DOI: 10.1080/09602011.2021.1971094
Abstract: Adjustment to life with acquired brain injury (ABI) requires self-identity and behaviour to be updated, incorporating injury-related changes. Identifying and enabling new values-consistent behaviours could facilitate this process. We evaluated the feasibility, acceptability, and preliminary efficacy of VaLiANT, a new group intervention that aims to enhance "valued living" following ABI. We used a non-concurrent multiple baseline single-case experimental design (SCED) with an 8-week follow-up phase and randomization to multiple baseline lengths (5-7 weeks). Eight participants (50% women, aged 26-65 4 Stroke, 3 Traumatic Brain Injury, 1 Epilepsy) attended eight group sessions with assessments before, during, and after the group. Target behaviour was valued living, assessed weekly by the Valued Living Questionnaire. Secondary outcomes included measures of wellbeing, mood, psychological acceptance, self-efficacy regarding ABI consequences, cognitive complaints, and intervention acceptability. Target behaviour was analysed through visual and statistical analysis while secondary outcome data were analysed via reliable change indices and descriptive statistics. Target behaviour data displayed no convincing patterns of improvement. Reliable improvements were found for most participants on secondary outcomes, particularly subjective wellbeing and anxiety. Intervention delivery was feasible with high acceptability ratings. Further investigation of VaLiANT is warranted, based on the feasibility and acceptability of intervention delivery and signals of efficacy identified across adjustment-related secondary outcomes.
Publisher: SAGE Publications
Date: 29-07-2019
Abstract: This review aimed to determine the effectiveness of personal smart technologies on outcomes in adults with acquired brain injury. A systematic literature search was conducted on 30 May 2019. Twelve electronic databases, grey literature databases, PROSPERO, reference list and author citations were searched. Randomised controlled trials were included if personal smart technology was used to improve independence, goal attainment/function, fatigue or quality of life in adults with acquired brain injury. Data were extracted using a bespoke form and the TIDieR checklist. Studies were graded using the PEDro scale to assess quality of reporting. Meta-analysis was conducted across four studies. Six studies met the inclusion criteria, generating a total of 244 participants. All studies were of high quality (PEDro ⩾ 6). Interventions included personal digital assistant, smartphone app, mobile phone messaging, Neuropage and an iPad. Reporting of intervention tailoring for in idual needs was inconsistent. All studies measured goal attainment/function but none measured independence or fatigue. One study ( At present, there is insufficient evidence to support the clinical benefit of personal smart technologies to improve outcomes in acquired brain injury. Researchers need to conduct more randomised studies to evaluate these interventions and measure their potential effects/harms.
Publisher: Wiley
Date: 10-11-2019
Publisher: National Institute for Health and Care Research
Date: 2020
DOI: 10.3310/HTA24040
Abstract: People with multiple sclerosis have problems with memory and attention. The effectiveness of cognitive rehabilitation has not been established. The objectives were to assess the clinical effectiveness and cost-effectiveness of a cognitive rehabilitation programme for people with multiple sclerosis. This was a multicentre, randomised controlled trial in which participants were randomised in a ratio of 6 : 5 to receive cognitive rehabilitation plus usual care or usual care alone. Participants were assessed at 6 and 12 months after randomisation. The trial was set in hospital neurology clinics and community services. Participants were people with multiple sclerosis who had cognitive problems, were aged 18–69 years, could travel to attend group sessions and gave informed consent. The intervention was a group cognitive rehabilitation programme delivered weekly by an assistant psychologist to between four and six participants for 10 weeks. The primary outcome was the Multiple Sclerosis Impact Scale – Psychological subscale at 12 months. Secondary outcomes included results from the Everyday Memory Questionnaire, the 30-Item General Health Questionnaire, the EuroQol-5 Dimensions, five-level version and a service use questionnaire from participants, and the Everyday Memory Questionnaire – relative version and the Modified Carer Strain Index from a relative or friend of the participant. Of the 449 participants randomised, 245 were allocated to cognitive rehabilitation (intervention group) and 204 were allocated to usual care (control group). Of these, 214 in the intervention group and 173 in the control group were included in the primary analysis. There was no clinically important difference in the Multiple Sclerosis Impact Scale – Psychological subscale score between the two groups at the 12-month follow-up (adjusted difference in means –0.6, 95% confidence interval –1.5 to 0.3 p = 0.20). There were no important differences between the groups in relation to cognitive abilities, fatigue, employment, or carer strain at follow-up. However, there were differences, although small, between the groups in the Multiple Sclerosis Impact Scale – Psychological subscale score at 6 months (adjusted difference in means –0.9, 95% confidence interval –1.7 to –0.1 p = 0.03) and in everyday memory on the Everyday Memory Questionnaire as reported by participants at 6 (adjusted difference in means –5.3, 95% confidence interval –8.7 to –1.9) and 12 months (adjusted difference in means –4.4, 95% confidence interval –7.8 to –0.9) and by relatives at 6 (adjusted difference in means –5.4, 95% confidence interval –9.1 to –1.7) and 12 months (adjusted difference in means –5.5, 95% confidence interval –9.6 to –1.5) in favour of the cognitive rehabilitation group. There were also differences in mood on the 30-Item General Health Questionnaire at 6 (adjusted difference in means –3.4, 95% confidence interval –5.9 to –0.8) and 12 months (adjusted difference in means –3.4, 95% confidence interval –6.2 to –0.6) in favour of the cognitive rehabilitation group. A qualitative analysis indicated perceived benefits of the intervention. There was no evidence of a difference in costs (adjusted difference in means –£574.93, 95% confidence interval –£1878.93 to £729.07) or quality-adjusted life-year gain (adjusted difference in means 0.00, 95% confidence interval –0.02 to 0.02). No safety concerns were raised and no deaths were reported. The trial included a s le of participants who had relatively severe cognitive problems in daily life. The trial was not powered to perform subgroup analyses. Participants could not be blinded to treatment allocation. This cognitive rehabilitation programme had no long-term benefits on quality of life for people with multiple sclerosis. Future research should evaluate the selection of those who may benefit from cognitive rehabilitation. Current Controlled Trials ISRCTN09697576. This project was funded by the National Institute for Health Research Health Technology Assessment programme and will be published in full in Health Technology Assessment Vol. 24, No. 4. See the National Institute for Health Research Journals Library website for further project information.
Publisher: Hindawi Limited
Date: 16-01-2019
DOI: 10.1111/IJCP.13300
Abstract: People diagnosed with multiple sclerosis often have cognitive problems. However, it is unclear how cognitive impairment is currently assessed and managed in the UK. The aim of this study was to understand the current clinical practice of assessment and management of cognitive impairment in people with MS and to highlight any national variation. A survey was posted to 150 MS centres and large hospitals and an online version was shared via email and on social media. Responses were analysed from 109 healthcare professionals. Approximately 59% (n = 64) reported that they used cognitive assessment tools: the Montreal Cognitive Assessment (MoCA) was the most widely used. Assessments were usually done by occupational therapists (55% n = 60) or clinical neuropsychologist and psychologists (38% n = 41) 49% (n = 53) of respondents developed and implemented a cognitive rehabilitation plan when the assessment indicated that patients had cognitive problems 16% (n = 17) indicated that they would refer patients to specialist cognitive rehabilitation for symptom management 3% (n = 3) followed a manual when providing a cognitive rehabilitation programme. Clinical pathways for assessing and managing cognitive problems vary and are dependent on the in idual expertise of health professionals, available resources, and access to specialist services. Although healthcare professionals highlight the importance of assessment and management, cognitive rehabilitation programmes are not routinely offered in the UK.
Publisher: SAGE Publications
Date: 30-06-2022
DOI: 10.1177/02692155221107738
Abstract: The primary objective was to gain insight into the lived experiences of using day-to-day strategies to manage post-stroke fatigue. Qualitative, descriptive study. Community telephone interviews. A purposive s le of 20 stroke survivors with current, or previous, post-stroke fatigue, and 8 caregivers, who provided informal care or support, were recruited. Semi-structured telephone interviews were undertaken. Data were analysed using a framework approach. Most participants had found their own ways of coping and their personal strategies included acceptance of having fatigue ‘pacing’ (spreading activities out and interspersing with rest periods) keeping a diary in order to plan activities and to identify ‘trigger’ activities which induced fatigue talking to (and educating) others about having fatigue using relaxation and accessing professional advice and support. The burden placed on caregivers was considerable and they often had to oversee the post-stroke fatigue management strategies used. Post-stroke fatigue is managed in different ways and there was not one particular strategy that seemed effective for everyone. Most people in our study had had to devise their own ways of coping practically. Given the scale of this problem, which profoundly impacts the lives of both stroke survivors and caregivers, the management of post-stroke fatigue merits more attention and evaluation. However, this must be directly informed by those with lived experience.
Publisher: Cold Spring Harbor Laboratory
Date: 21-12-2022
DOI: 10.1101/2022.12.20.22283555
Abstract: The PRomoting Activity, Independence and Stability in Early Dementia (PrAISED) study delivered an exercise and functional activity programme to participants living with dementia. A Randomised Controlled Trial (RCT) showed no measurable benefits in activities of daily living, physical activity or quality of life. To explore participants’ responses to PrAISED and explain the mechanisms behind a complex intervention that did not lead to expected health gains. A process evaluation using qualitative methods, comprising interviews and researcher notes Data were collected in participants’ homes or remotely by telephone or videoconferencing. Eighty-eight interviews were conducted with 44 participants living with dementia (n = 32 intervention group n = 12 control group) and 39 caregivers. Sixty-nine interviews were conducted with 26 therapists. Participants valued the intervention as proactively addressing health issues that were of concern to them, and as sources of social contact, interaction, information, and advice. Facilitators to achieving positive outcomes included perceiving progress toward desired goals, positive expectations, therapists’ skills and rapport with participants, and caregiver support. Barriers included: cognitive impairment, which prevented independent engagement and carryover between sessions chronic physical health problems and intercurrent acute illness and injury ‘tapering’ (progressively infrequent supervision intended to help develop habits and independent activity) and the COVID-19 pandemic. Interventions aiming to maintain activity, independence and stability may not be appropriate in the context of dementia even in the mild stages of the condition. Various factors affected outcomes including caregiver support, rapport with therapists, availability of supervision, motivational factors, and the limitations of remote delivery. The effects of cognitive impairment, multimorbidity and frailty overwhelmed any positive impact of the intervention. Maintenance of functional ability is valued, but in the face of inevitable progression of disease, other less tangible outcomes become important, challenging how we frame ‘health gain’ and trial outcomes.
Publisher: Cold Spring Harbor Laboratory
Date: 20-12-2022
DOI: 10.1101/2022.12.20.22283699
Abstract: Dementia is associated with frailty leading to increased risks of falls and hospitalisations. Interventions are required to maintain functional ability, strength and balance. Multi-centre parallel group randomised controlled trial, with embedded process evaluation. Procedures were adapted during the COVID-19 pandemic. People with mild dementia or mild cognitive impairment (MCI), living at home, and a family member or carer. To determine the effectiveness of an exercise and functional activity therapy intervention compared to usual care. A specially-designed dementia-specific rehabilitation programme focussing on strength, balance, physical activity and performance of ADL, which was tailored, progressive, addressed risk and the psychological and learning needs of people with dementia, providing up to 50 therapy sessions over 12 months. The control group received usual care plus a falls risk assessment. The primary outcome was the informant-reported Disability Assessment for Dementia (DAD) 12 months after randomisation. Secondary outcomes were: self-reported ADL, cognition, physical activity, quality of life, frailty, balance, functional mobility, fear of falling, mood, carer strain and service use (at 12 months) and falls (between months 4 and 15). 365 people were randomised, 183 to intervention and 182 to control. Median age of participants was 80 years (range 65-95), median Montreal Cognitive Assessment score 20/30 (range 13-26), 58% were men. Participants received a median of 31 (IQR = 22-40) therapy sessions out of a possible maximum of 50. Participants reported completing a mean 121 minutes/week of PrAISED activity outside of supervised sessions. Primary outcome data were available for 149 (intervention) and 141 (control) participants. There was no difference in DAD scores between groups: adjusted mean difference -1.3/100, 95% Confidence Interval (−5.2 to +2.6) Cohen’s d effect size -0.06 (−0.26 to +0.15) p=0.5. Upper 95% confidence intervals excluded small to moderate effects on any of the range of secondary outcome measures. Between months 4 and 15 there were 79 falls in the intervention group and 200 falls in the control group, adjusted incidence rate ratio 0.78 (0.5 to 1.3) p= 0.3. The intensive PrAISED programme of exercise and functional activity training did not improve ADLs, physical activity, quality of life, reduce falls or improve any other secondary health status outcomes even though uptake was good. Future research should consider alternative approaches to risk reduction and ability maintenance. ISRCTN15320670. National Institute for Health and Care Research Dementia is associated with progressive loss of functional ability, including activities of daily living and mobility, and a high risk of falls Exercise programmes and rehabilitation therapies may improve ability, or slow the rate of decline, but evidence from trials and systematic reviews is equivocal We developed an intensive dementia-specific exercise and functional activity rehabilitation programme, lasting 12 months, taking account of motivation, learning needs and context, in particular the need to engage carers, and evaluated it in a randomised controlled trial The programme was very well received by participants and therapists, but had no effect on activities of daily living, physical activity, quality of life, falls, cognition or any other health status outcome We are unlikely to be able to change rate of loss of ability in dementia through exercise or functionally orientated rehabilitation therapy. We need different ways of defining wellbeing after a dementia diagnosis.
Publisher: National Institute for Health and Care Research
Date: 02-2021
DOI: 10.3310/HTA25090
Abstract: Cognitive–behavioural therapy aims to increase quality of life by changing cognitive and behavioural factors that maintain problematic symptoms. A previous overview of cognitive–behavioural therapy systematic reviews suggested that cognitive–behavioural therapy was effective for many conditions. However, few of the included reviews synthesised randomised controlled trials. This project was undertaken to map the quality and gaps in the cognitive–behavioural therapy systematic review of randomised controlled trial evidence base. Panoramic meta-analyses were also conducted to identify any across-condition general effects of cognitive–behavioural therapy. The overview was designed with cognitive–behavioural therapy patients, clinicians and researchers. The Cochrane Library, MEDLINE, EMBASE, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, Child Development & Adolescent Studies, Database of Abstracts of Reviews of Effects and OpenGrey databases were searched from 1992 to January 2019. Study inclusion criteria were as follows: (1) fulfil the Centre for Reviews and Dissemination criteria (2) intervention reported as cognitive–behavioural therapy or including one cognitive and one behavioural element (3) include a synthesis of cognitive–behavioural therapy trials (4) include either health-related quality of life, depression, anxiety or pain outcome and (5) available in English. Review quality was assessed with A MeaSurement Tool to Assess systematic Reviews (AMSTAR)-2. Reviews were quality assessed and data were extracted in duplicate by two independent researchers, and then mapped according to condition, population, context and quality. The effects from high-quality reviews were pooled within condition groups, using a random-effect panoramic meta-analysis. If the across-condition heterogeneity was I 2 75%, we pooled across conditions. Subgroup analyses were conducted for age, delivery format, comparator type and length of follow-up, and a sensitivity analysis was performed for quality. A total of 494 reviews were mapped, representing 68% (27/40) of the categories of the International Classification of Diseases, Eleventh Revision, Mortality and Morbidity Statistics. Most reviews (71%, 351/494) were of lower quality. Research on older adults, using cognitive–behavioural therapy preventatively, ethnic minorities and people living outside Europe, North America or Australasia was limited. Out of 494 reviews, 71 were included in the primary panoramic meta-analyses. A modest effect was found in favour of cognitive–behavioural therapy for health-related quality of life (standardised mean difference 0.23, 95% confidence interval 0.05 to 0.41, prediction interval –0.05 to 0.50, I 2 = 32%), anxiety (standardised mean difference 0.30, 95% confidence interval 0.18 to 0.43, prediction interval –0.28 to 0.88, I 2 = 62%) and pain (standardised mean difference 0.23, 95% confidence interval 0.05 to 0.41, prediction interval –0.28 to 0.74, I 2 = 64%) outcomes. All condition, subgroup and sensitivity effect estimates remained consistent with the general effect. A statistically significant interaction effect was evident between the active and non-active comparator groups for the health-related quality-of-life outcome. A general effect for depression outcomes was not produced as a result of considerable heterogeneity across reviews and conditions. Data extraction and analysis were conducted at the review level, rather than returning to the in idual trial data. This meant that the risk of bias of the in idual trials could not be accounted for, but only the quality of the systematic reviews that synthesised them. Owing to the consistency and homogeneity of the highest-quality evidence, it is proposed that cognitive–behavioural therapy can produce a modest general, across-condition benefit in health-related quality-of-life, anxiety and pain outcomes. Future research should focus on how the modest effect sizes seen with cognitive–behavioural therapy can be increased, for ex le identifying alternative delivery formats to increase adherence and reduce dropout, and pursuing novel methods to assess intervention fidelity and quality. This study is registered as PROSPERO CRD42017078690. This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment Vol. 25, No. 9. See the NIHR Journals Library website for further project information.
Publisher: SAGE Publications
Date: 26-11-2019
Abstract: To assess the clinical and cost-effectiveness of cognitive rehabilitation for attention and memory problems in people with multiple sclerosis. Multicentre, pragmatic, randomized controlled trial. Community People with multiple sclerosis aged 18–69 years, who reported cognitive problems in daily life and had cognitive problems on standardized assessment. A group cognitive rehabilitation programme delivered in 10 weekly sessions in comparison with usual care. The primary outcome was the Multiple Sclerosis Impact Scale Psychological subscale at 12 months after randomization. Secondary outcomes included measures of everyday memory problems, mood, fatigue, cognitive abilities and employment at 6 and 12 months after randomization. In all, 245 participants were allocated to cognitive rehabilitation and 204 to usual care. Mean Multiple Sclerosis Impact Scale Psychological at 12 months was 22.2 (SD = 6.1) for cognitive rehabilitation and 23.4 (SD = 6.0) for usual care group adjusted difference −0.6, 95% confidence interval (CI) = −1.5 to 0.3, P = 0.20. No differences were observed in cognitive abilities, fatigue or employment. There were small differences in favour of cognitive rehabilitation for the Multiple Sclerosis Impact Scale Psychological at 6 months and everyday memory and mood at 6 and 12 months. There was no evidence of an effect on costs (−£808 95% CI = −£2248 to £632) or on quality-adjusted life year gain (0.00 95% CI = −0.01 to 0.02). This rehabilitation programme had no long-term benefits on the impact of multiple sclerosis on quality of life, but there was some evidence of an effect on everyday memory problems and mood.
Publisher: Cold Spring Harbor Laboratory
Date: 09-07-2023
DOI: 10.1101/2023.07.08.23292404
Abstract: Impaired attention performance is a significant burden to people with multiple sclerosis (MS). Brain connectivity fluctuates with transitions between cognitive states, so measurement of network dynamics during these conditions may help to understand MS-related attention impairment. In people with MS and healthy controls, attention was measured using the Attention Network Test. 3T MRI was used to measure structural connectivity and both static and dynamic functional connectivity in the attention-related fronto-parietal network (FPN) at rest and during an attentionally-demanding task. Groups were compared on connectivity of the FPN during rest and task performance. Relationships between network connectivity and attention performance were tested using linear regression. The s le comprised 37 people with MS and 23 matched controls. At rest, people with MS had significantly lower structural connectivity (R 2 =0.13, p=0.004), lower static functional connectivity (R 2 =0.07, p=0.032) and higher dynamic functional connectivity (R 2 =0.08, p=0.026) of the FPN. Higher dynamic connectivity was significantly associated with poorer attention performance in people with MS (R 2 =0.20, p=0.008). During attention-task performance, static functional connectivity was greater in people with MS than controls (R 2 =0.10, p=0.008). The task-induced reduction in static connectivity (relative to rest) was directly related to attention performance (R 2 =0.23, p .001). Increased dynamic functional connectivity of the FPN at rest may be a useful indicator of deficits in sustained attention in people with MS. The transition from rest to active-attentive state is accompanied by an increase in dynamic connectivity, and decrease in static connectivity which may be helpful in understanding aetiology and treatment of attention impairment.
Publisher: Springer Science and Business Media LLC
Date: 06-01-2015
Publisher: National Institute for Health and Care Research
Date: 09-2019
DOI: 10.3310/HTA23470
Abstract: There is currently insufficient evidence for the clinical effectiveness and cost-effectiveness of psychological therapies for post-stroke depression. To evaluate the feasibility of undertaking a definitive trial to evaluate the clinical effectiveness and cost-effectiveness of behavioural activation (BA) compared with usual stroke care for treating post-stroke depression. Parallel-group, feasibility, multicentre, randomised controlled trial with nested qualitative research and a health economic evaluation. Acute and community stroke services in three sites in England. Community-dwelling adults 3 months to 5 years post stroke who are depressed, as determined by the Patient Health Questionnaire-9 (PHQ-9) or the Visual Analogue Mood Scales ‘Sad’ item. Exclusions: patients who are blind and/or deaf, have dementia, are unable to communicate in English, do not have mental capacity to consent, are receiving treatment for depression at the time of stroke onset or are currently receiving psychological intervention. Participants were randomised (1 : 1 ratio) to BA or usual stroke care. Randomisation was conducted using a computer-generated list with random permuted blocks of varying sizes, stratified by site. Participants and therapists were aware of the allocation, but outcome assessors were blind. The intervention arm received up to 15 sessions of BA over 4 months. BA aims to improve mood by increasing people’s level of enjoyable or valued activities. The control arm received usual care only. Primary feasibility outcomes concerned feasibility of recruitment to the main trial, acceptability of research procedures and measures, appropriateness of baseline and outcome measures, retention of participants and potential value of conducting the definitive trial. Secondary feasibility outcomes concerned the delivery of the intervention. The primary clinical outcome 6 months post randomisation was the PHQ-9. Secondary clinical outcomes were Stroke Aphasic Depression Questionnaire – Hospital version, Nottingham Leisure Questionnaire, Nottingham Extended Activities of Daily Living, Carer Strain Index, EuroQol-5 Dimensions, five-level version and health-care resource use questionnaire. Forty-eight participants were recruited in 27 centre-months of recruitment, at a recruitment rate of 1.8 participants per centre per month. The 25 participants randomised to receive BA attended a mean of 8.5 therapy sessions [standard deviation (SD) 4.4 therapy sessions] 23 participants were allocated to usual care. Outcome assessments were completed by 39 (81%) participants (BA, n = 18 usual care, n = 21). Mean PHQ-9 scores at 6-month follow-up were 10.1 points (SD 6.9 points) and 14.4 points (SD 5.1 points) in the BA and control groups, respectively, a difference of –3.8 (95% confidence interval –6.9 to –0.6) after adjusting for baseline PHQ-9 score and centre, representing a reduction in depression in the BA arm. Therapy was delivered as intended. BA was acceptable to participants, carers and therapists. Value-of-information analysis indicates that the benefits of conducting a definitive trial would be likely to outweigh the costs. It is estimated that a s le size of between 580 and 623 participants would be needed for a definitive trial. Target recruitment was not achieved, although we identified methods to improve recruitment. The Behavioural Activation Therapy for Depression after Stroke trial was feasible with regard to the majority of outcomes. The outstanding issue is whether or not a sufficient number of participants could be recruited within a reasonable time frame for a definitive trial. Future work is required to identify whether or not there are sufficient sites that are able to deliver the services required for a definitive trial. Current Controlled Trials ISRCTN12715175. This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment Vol. 23, No. 47. See the NIHR Journals Library website for further project information.
Location: United Kingdom of Great Britain and Northern Ireland
Location: India
Location: United Kingdom of Great Britain and Northern Ireland
No related grants have been discovered for Roshan das Nair.