RESUMEN
OBJECTIVE: To describe the process of developing a job retention vocational rehabilitation intervention for people with multiple sclerosis. DESIGN: We used the person-based approach, to develop interventions through an iterative process incorporating stakeholders' views, resulting in an intervention that is likely to be more acceptable, contextually relevant, and implementable for end-users. Phase 1 combined the results of a systematic review and interview study to develop the guiding principles and intervention logic model. Phase 2 involved conceptual testing and refining the intervention with stakeholder feedback. We present the final intervention following the template for intervention description and replication. PARTICIPANTS: We recruited 20 participants for Phase 1 (10 people with multiple sclerosis, four employers, six healthcare professionals), and 10 stakeholders (three people with multiple sclerosis, seven healthcare professionals) for Phase 2 to contribute to the intervention refinement process. RESULTS: Stakeholders described the need for an individually tailored intervention to support people with multiple sclerosis to manage symptoms and workplace relationships. A stepped-care approach and remote support were deemed essential. The resulting intervention involves an initial assessment of employment needs, vocational goal setting, up to 10â h of tailored support (e.g., reasonable adjustments, employer engagement, legal rights), and a final review to discuss future steps. People with multiple sclerosis can include their employer for advice to optimise the management of the employee with multiple sclerosis at work. CONCLUSION: The person-based approach provided a rigorous framework to systematically understand the vocational needs of people with multiple sclerosis and develop a vocational rehabilitation intervention.
Asunto(s)
Esclerosis Múltiple , Rehabilitación Vocacional , Humanos , Rehabilitación Vocacional/métodos , Esclerosis Múltiple/rehabilitación , Masculino , Femenino , Adulto , Persona de Mediana Edad , Empleo , Desarrollo de Programa , Seguridad del EmpleoRESUMEN
OBJECTIVES: To evaluate the feasibility and acceptability of an emotional support programme for newly diagnosed people with multiple sclerosis. DESIGN: Three-arm, mixed methods, randomised controlled trial comparing usual care, versus usual care plus nurse-specialist support, versus usual care plus nurse-specialist support plus peer support. PARTICIPANTS: Community-dwelling adults within two years of diagnosis or undergoing diagnosis. INTERVENTIONS: PrEliMS involves information provision, emotional support, and strategies and techniques based on psychoeducation, Acceptance and Commitment Therapy principles, supportive listening. One version of the intervention was provided by nurse-specialists alone and the other was provided by nurse-specialists plus peer support. MAIN MEASURES: The main outcome of interest was the feasibility of proceeding to a definitive trial, exploring recruitment rate, acceptability, completion of outcome measures (perceived stress, mood, self-efficacy, psychological impact, and service use), and signal of efficacy. RESULTS: Of 40 participants randomised (mean age 36.2 years (SD = 14.8); 54% women; 85% with relapsing-remitting MS), 36 and 38 returned 3- and 6-month questionnaires, respectively. Participant interviews suggested the trial was largely feasible, and the intervention acceptable, with some amendments to trial procedures and intervention delivery noted. There were, however, no statistically significant differences between groups at followup for any measures, and effect-size estimates were small. CONCLUSION: A definitive trial combining nurse-specialist and peer support adjustment to diagnosis intervention is warranted, but more work exploring the delivery and fidelity of the intervention is needed before this is pursued.
RESUMEN
BACKGROUND: To explore how a vocational rehabilitation (VR) intervention can be integrated within existing healthcare services for people with multiple sclerosis (MS) in the United Kingdom (UK) National Health Service (NHS). METHODS: Data from 37 semi-structured interviews with 22 people with MS, eight employers, and seven healthcare professionals were analysed using a framework method informed by the Consolidated Framework for Implementation Research and an intervention logic model. RESULTS: Four themes were identified relating to the structure of current NHS services, how to improve access to and awareness of VR services, the collaboration between internal and external networks, and the benefits of integrating VR within the NHS services. Participants identified several implementation barriers such as poor links with external organisations, staffing issues, and lack of funding. To overcome these barriers, participants suggested enablers such as technology (e.g., apps or online assessments) and collaboration with third-sector organisations to reduce the pressure on the NHS. CONCLUSION: Significant organisational changes are required to ensure a successful implementation of a VR intervention within current NHS services. Despite this, the NHS was seen as a trustworthy organisation to offer support that can optimise the health and professional lives of people with MS.
Asunto(s)
Esclerosis Múltiple , Investigación Cualitativa , Rehabilitación Vocacional , Medicina Estatal , Humanos , Reino Unido , Rehabilitación Vocacional/métodos , Esclerosis Múltiple/rehabilitación , Masculino , Femenino , Adulto , Persona de Mediana Edad , Entrevistas como Asunto , Prestación Integrada de Atención de Salud/organización & administraciónRESUMEN
Effective interventions that facilitate adjustment following acquired brain injury (ABI) are needed to improve long-term outcomes and meaningful reengagement in life. VaLiANT is an 8-week group intervention that combines cognitive rehabilitation with Acceptance and Commitment therapy to improve valued living, wellbeing, and adjustment. This study explored participant experiences of VaLiANT to optimize its ongoing development. This included characterization of individually meaningful treatment outcomes, mechanisms of action, and intervention acceptability. Qualitative interviews and quantitative ratings were collected from 39 ABI survivors (Mage = 52, SD = 15; 54% stroke) following their participation in VaLiANT. Participants reported diverse outcomes which resulted in three themes being generated following reflexive thematic analysis. "A fuller toolkit for life with brain injury" indicated increased strategy usage and better daily functioning; "The value of connection and belonging" captured the importance of social experiences in shaping recovery; and "Finding the me I can be" represented cognitive, behavioural, and emotional aspects of identity reconstruction post-ABI. The content and delivery of the intervention were rated highly but participants desired greater follow-up and tailoring of the intervention. Overall, VaLiANT appears to facilitate adjustment through several mechanisms, but greater intervention individualization and dosage may be required to enhance the treatment impact.
RESUMEN
OBJECTIVE: To evaluate the feasibility of conducting a cohort randomised-controlled trial (RCT) of a nurse-led package of care for knee pain and determine treatment sequence for use in a future trial. METHODS: Open label, three-arm, single-centre, mixed-methods, feasibility cohort RCT. Adults aged ≥40 years with moderate-to-severe knee pain for ≥3 months were eligible. Participants were randomised into groups A (non-pharmacological treatment first), B (pharmacological treatment first), or group C (usual care). The intervention was delivered over 26-weeks. Outcomes were dropout rate, recruitment rate, intervention fidelity, ability to collect outcome data and treatment acceptability. RESULTS: Seventeen participants were randomised and enrolled into each of groups A and B (5.2% recruitment rate), and 174 randomised to group C. Participant characteristics at randomisation were comparable across the three arms. COVID-19 paused the study from March-November-2020. Participants enrolled in groups A and B before March-2020 were withdrawn at restart. Of the 20 participants enrolled after restart, 18 completed the study (10% dropout). The nurse reported delivering most aspects of the intervention with high fidelity. Participants viewed the package of care as structured, supportive and holistic, they learnt about self-managing knee pain, and could engage with and follow the non-pharmacological treatment. Most found the non-pharmacological treatment more useful than the pharmacological treatment, preferring to receive it before or alongside analgesia. Many self-reported questionnaires were not fully completed. CONCLUSIONS: The nurse-led package of care for knee pain was acceptable with low dropout, although the cohort RCT design may not be feasible for a definitive trial. TRIAL REGISTRATION: clinicaltrials.gov; NCT03670706.
RESUMEN
Interventions addressing cognitive and emotional difficulties after acquired brain injury (ABI) often focus on specific impairments in cognition or mood. These interventions can be effective at addressing their specific target, but do not routinely translate to improved activity and participation outcomes. Approaches that combine cognitive and psychological rehabilitation are increasingly popular; however, to date, there have been no systematic evaluations of their efficacy. We conducted a systematic review of five databases, searching for randomised controlled trials of adults with diagnoses of non-progressive ABI at least 1-month post injury, in receipt of interventions that combined cognitive and psychological components compared to any control. Screening and data extraction were evaluated by two independent reviewers using a standardised protocol. Effect sizes were calculated using Hedge's g and estimated using a random-effects model. Risk of bias was assessed using the PEDro-P rating system, and quality of evidence evaluated using the grading of recommendation, assessment, development and evaluation (GRADE) approach. Thirteen studies were included in the meta-analysis (n = 684). There was an overall small-to-medium effect (g = 0.42) for combined interventions compared with controls, with gains maintained at 6-month follow-up. Improvements were observed at the level of impairment, activity, participation and quality of life. GRADE ratings and analyses investigating sensitivity, heterogeneity and publication bias indicated that these effects were robust. No a priori variables moderated these effects. Overall, this review provides strong evidence that combined cognitive and psychological interventions create meaningful change in the lives of people with ABI.
RESUMEN
Randomised controlled trials (RCTs) play an important role in multiple sclerosis (MS) research, ensuring that new interventions are safe and efficacious before their introduction into clinical practice. Trials have been evolving to improve the robustness of their designs and the efficiency of their conduct. Advances in digital and mobile technologies in recent years have facilitated this process and the first RCTs with decentralised elements became possible. Decentralised clinical trials (DCTs) are conducted remotely, enabling participation of a more heterogeneous population who can participate in research activities from different locations and at their convenience. DCTs also rely on digital and mobile technologies which allows for more flexible and frequent assessments. While hospitals quickly adapted to e-health and telehealth assessments during the COVID-19 pandemic, the conduct of conventional RCTs was profoundly disrupted. In this paper, we review the existing evidence and gaps in knowledge in the design and conduct of DCTs in MS.
Asunto(s)
COVID-19 , Esclerosis Múltiple , Telemedicina , Humanos , COVID-19/epidemiologíaRESUMEN
BACKGROUND: 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 showed no measurable benefits in activities of daily living, physical activity or quality of life. OBJECTIVE: To explore participants' responses to PrAISED and explain why an intervention that might be expected to have produced measurable health gains did not do so. METHODS: A process evaluation using qualitative methods, comprising interviews and researcher notes. SETTING: Data were collected in participants' homes or remotely by telephone or videoconferencing. SAMPLE: A total of 88 interviews were conducted with 44 participants living with dementia (n = 32 intervention group; n = 12 control group) and 39 caregivers. A total of 69 interviews were conducted with 26 therapists. RESULTS: Participants valued the intervention as proactively addressing health issues that were of concern to them, and as a source of social contact, interaction, information and advice. Facilitators to achieving positive outcomes included perceiving progress towards desired goals, positive expectations, therapists' skills and rapport with participants, and caregiver support. Barriers included: cognitive impairment, which prevented independent engagement and carry-over 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. CONCLUSIONS: Self-directed interventions may not be appropriate in the context of dementia, even in the mild stages of the condition. Dementia-specific 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.
Asunto(s)
COVID-19 , Demencia , Humanos , Actividades Cotidianas , Pandemias , Calidad de Vida , Demencia/diagnóstico , Demencia/terapiaRESUMEN
PURPOSE: To determine changes to people's social contact during COVID-19, and whether reduced social contact was associated with changes to psychosocial wellbeing. METHODS: Questionnaire data were collected from a sample of adult respondents (18 years or more) in two Norwegian counties participating pre-COVID-19 (September 2019-February 2020; n = 20,196) and at two time points during COVID-19 (June [Mid] and November/December [Late] 2020; n = 11,953 and n = 10,968, respectively). The main outcome measures were participants' self-reported changes to social contact, loneliness, psychological distress, and life satisfaction. RESULTS: The proportion of respondents reporting less social contact due to COVID-19 decreased from 62% in Mid-2020 to 55% in Late-2020. Overall, reported psychological wellbeing remained unchanged or improved from pre-COVID-19 to Mid-2020. From Mid-2020 to Late-2020, however, a reduction in psychological wellbeing was observed. Poorer psychological wellbeing was found for those with less social contact during the pandemic compared with people reporting unchanged social contact. This effect increased over time and was observed for all age groups at Late-2020. At Mid-2020, the importance of change in social contact for change in psychological wellbeing was greatest among young adults (< 30 years), while no significant differences were found for the oldest age group. CONCLUSION: The association between COVID-19-era changes to social contact and loneliness, psychological distress, and life satisfaction is complex and appears to be age-dependent. Future studies should consider the quality of social contact and cultural contexts in which social restrictions are imposed.
Asunto(s)
COVID-19 , Adulto Joven , Humanos , COVID-19/epidemiología , Pandemias , Calidad de Vida/psicología , Soledad , Estudios LongitudinalesRESUMEN
BACKGROUND: 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. PURPOSE: 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. METHODS: 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. RESULTS: 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 individually tailored, yet provided within a standardized system to ensure accessibility. CONCLUSIONS: 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. PATIENT OR PUBLIC CONTRIBUTION: 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.
Asunto(s)
Vías Clínicas , Esclerosis Múltiple , Humanos , Participación de los Interesados , Familia , Atención al PacienteRESUMEN
BACKGROUND: People with MS (pwMS) have had higher rates of anxiety and depression than the general population before the COVID-19 pandemic, placing them at higher risk of experiencing poor psychological wellbeing during the pandemic. OBJECTIVE: To assess mental health and its social/lifestyle determinants in pwMS during the first wave of the outbreak in the United Kingdom. METHODS: This is a community-based, prospective longitudinal cohort and cross-sectional case-control online questionnaire study. It includes 2010 pwMS from the UK MS Register and 380 people without MS. RESULTS: The Hospital Anxiety and Depression Scale scores of pwMS for anxiety and depression during the outbreak did not change from the previous year. PwMS were more likely to have anxiety (using General Anxiety Disorder-7) and/or depression (using Patient Health Questionnaire-9) than controls during the outbreak (OR: 2.14, 95% CI: 1.58-2.91). PwMS felt lonelier (OR: 1.37, 95% CI: 1.04-1.80) reported worse social support (OR: 1.90, 95% CI: 1.18-3.07) and reported worsened exercise habits (OR: 1.65, 95% CI: 1.18-2.32) during the outbreak than controls. CONCLUSION: Early in the pandemic, pwMS remained at higher risk of experiencing anxiety and depression than the general population. It is important that multidisciplinary teams improve their support for the wellbeing of pwMS, who are vulnerable to the negative effects of the pandemic on their lifestyle and social support.
Asunto(s)
COVID-19 , Esclerosis Múltiple , Ansiedad/epidemiología , COVID-19/epidemiología , Estudios de Casos y Controles , Estudios Transversales , Depresión/epidemiología , Humanos , Salud Mental , Esclerosis Múltiple/epidemiología , Pandemias , Estudios Prospectivos , SARS-CoV-2RESUMEN
OBJECTIVES: The primary objective was to gain insight into the lived experiences of using day-to-day strategies to manage post-stroke fatigue. DESIGN: Qualitative, descriptive study. SETTING: Community telephone interviews. PARTICIPANTS: A purposive sample of 20 stroke survivors with current, or previous, post-stroke fatigue, and 8 caregivers, who provided informal care or support, were recruited. MAIN MEASURES: Semi-structured telephone interviews were undertaken. Data were analysed using a framework approach. RESULTS: 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. CONCLUSIONS: 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.
Asunto(s)
Rehabilitación de Accidente Cerebrovascular , Accidente Cerebrovascular , Cuidadores , Fatiga , Humanos , Investigación Cualitativa , SobrevivientesRESUMEN
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.
Asunto(s)
Lesiones Encefálicas , Accidente Cerebrovascular , Ansiedad , Lesiones Encefálicas/complicaciones , Estudios de Factibilidad , Femenino , Humanos , Masculino , Autoeficacia , Accidente Cerebrovascular/complicaciones , Accidente Cerebrovascular/psicología , Encuestas y CuestionariosRESUMEN
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.
Asunto(s)
Disfunción Cognitiva , Esclerosis Múltiple , Cognición , Disfunción Cognitiva/diagnóstico , Disfunción Cognitiva/etiología , Grupos Focales , Humanos , Esclerosis Múltiple/complicaciones , Esclerosis Múltiple/diagnóstico , Calidad de VidaRESUMEN
Three decades ago a series of parallel circuits were described involving the frontal cortex and deep grey matter structures, with putative roles in control of motor and oculomotor function, cognition, behaviour and emotion. The circuit comprising the dorsolateral prefrontal cortex, caudate, globus pallidus and thalamus has a putative role in regulating executive functions. The aim of this study is to investigate effective connectivity (EC) of the dorsolateral-prefrontal circuit and its association with PASAT-3 performance in people with multiple sclerosis(MS). We use Granger causality analysis of resting-state functional MRI from 52 people with MS and 36 healthy people to infer that reduced EC in the afferent limb of the dorsolateral prefrontal circuit occurs in the people with MS with cognitive dysfunction (left: p = .006; right: p = .029), with bilateral EC reductions in this circuit resulting in more severe cognitive dysfunction than unilateral reductions alone (p = .002). We show that reduced EC in the afferent limb of the dorsolateral prefrontal circuit mediates the relationship between cognitive performance and macrostrucutral and microstructural alterations of white matter tracts in components of the circuit. Specificity is shown by the absence of any relationship between cognition and EC in the analogous and anatomically proximal motor circuit. We demonstrate good stability of the EC measures in people with MS over an interval averaging 8-months. Key positive and negative results are replicated in an independent cohort of people with MS. Our findings identify the dorsolateral prefrontal circuit as a potential target for therapeutic strategies aimed at improving cognition in people with MS.
Asunto(s)
Corteza Prefontal Dorsolateral/diagnóstico por imagen , Esclerosis Múltiple/diagnóstico por imagen , Esclerosis Múltiple/psicología , Red Nerviosa/diagnóstico por imagen , Pruebas Neuropsicológicas , Sustancia Blanca/diagnóstico por imagen , Adulto , Estudios de Cohortes , Corteza Prefontal Dorsolateral/fisiopatología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Esclerosis Múltiple/fisiopatología , Red Nerviosa/fisiopatología , Estudios Prospectivos , Sustancia Blanca/fisiopatologíaRESUMEN
The majority of psychological treatment research is dedicated to investigating the effectiveness of cognitive behavioural therapy (CBT) across different conditions, population and contexts. We aimed to summarise the current systematic review evidence and evaluate the consistency of CBT's effect across different conditions. We included reviews of CBT randomised controlled trials in any: population, condition, format, context, with any type of comparator and published in English. We searched DARE, Cochrane, MEDLINE, EMBASE, PsycINFO, CINAHL, CDAS, and OpenGrey between 1992 and January 2019. Reviews were quality assessed, their data extracted and summarised. The effects upon health-related quality of life (HRQoL) were pooled, within-condition groups. If the across-condition heterogeneity was I2 < 75%, we pooled effects using a random-effect panoramic meta-analysis. We summarised 494 reviews (221 128 participants), representing 14/20 physical and 13/20 mental conditions (World Health Organisation's International Classification of Diseases). Most reviews were lower-quality (351/494), investigated face-to-face CBT (397/494), and in adults (378/494). Few reviews included trials conducted in Asia, South America or Africa (45/494). CBT produced a modest benefit across-conditions on HRQoL (standardised mean difference 0.23; 95% confidence intervals 0.14-0.33, I2 = 32%). The effect's associated prediction interval -0.05 to 0.50 suggested CBT will remain effective in conditions for which we do not currently have available evidence. While there remain some gaps in the completeness of the evidence base, we need to recognise the consistent evidence for the general benefit which CBT offers.
Asunto(s)
Terapia Cognitivo-Conductual/métodos , Terapia Cognitivo-Conductual/estadística & datos numéricos , Trastornos Mentales/terapia , Humanos , Trastornos Mentales/psicología , Calidad de Vida , Resultado del TratamientoRESUMEN
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.
Asunto(s)
Actividades Cotidianas , Esclerosis Múltiple , Cognición , Humanos , Trastornos de la Memoria/etiología , Calidad de VidaRESUMEN
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).
Asunto(s)
Terapia de Aceptación y Compromiso , Esclerosis Múltiple , Cuidadores , Estudios de Factibilidad , Humanos , Esclerosis Múltiple/terapia , Calidad de VidaRESUMEN
Tobacco smoking is a well-established risk factor for multiple sclerosis (MS) onset, progression and poor health outcomes in people with MS. Despite smoking being a modifiable risk factor, no research has been undertaken to understand how, or who is best placed, to assess or understand smoking behaviour in people with MS, or how healthcare professionals can best assist people with MS to quit. People with MS may have unique motivators to continue smoking, or unique barriers to smoking cessation, that are not addressed by existing cessation tools. Research is urgently needed in this area if the aim is to maximise health outcomes for all people with MS.
Asunto(s)
Esclerosis Múltiple/terapia , Cese del Hábito de Fumar , Fumar , Humanos , Esclerosis Múltiple/epidemiología , Esclerosis Múltiple/etiología , Factores de Riesgo , Fumar/efectos adversos , Fumar/epidemiología , Fumar/terapia , Cese del Hábito de Fumar/métodos , Cese del Hábito de Fumar/estadística & datos numéricosRESUMEN
OBJECTIVE: To evaluate the effectiveness of behavioural activation interventions for people with neurological conditions with comorbid depression, and explore content and adaptations. DATA SOURCES: PsycINFO, MEDLINE, CINAHL, AMED, and EMBASE databases were searched on the 19 November 2019. Reference lists of selected full-texts were screened by title. REVIEW METHODS: We included peer-reviewed studies published in English that used behavioural activation for treatment of depression in adults with a neurological condition. Single-case reports, reviews, and grey literature were excluded. Methodological quality was assessed by two authors independently, and quality was appraised using Critical Appraisal Skills Programme checklists. RESULTS: From 2714 citations, 10 articles were included comprising 590 participants. Behavioural activation was used to treat depression in people with dementia (n = 4), stroke (n = 3), epilepsy (n = 1), Parkinson's disease (n = 1), and brain injury (n = 1). Sample size ranged from 4 to 105 participants. There were seven randomized controlled studies; however, no studies compared behavioural activation to an alternative psychological therapy. The effect sizes varied between small and large in the studies where effect size could be calculated (d = 0.24-1.7). Methodological quality of the included studies was variable. Intervention components were identifying and engaging in pleasurable activities, psychoeducation, and problem-solving. Adaptations included delivering sessions via telephone, delivering interventions via primary caregivers, and giving psychoeducation to caregivers. CONCLUSION: The effectiveness of behavioural activation in randomized controlled trials varied from small to large (d = 0.24-1.7) in reducing depression. The content of behavioural activation was comparable to established treatment manuals. Adaptations appeared to support individuals to engage in therapy. REVIEW REGISTRATION: PROSPERO 2018, CRD42018102604.