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1.
Int J Stroke ; 19(4): 397-405, 2024 Apr.
Article in English | MEDLINE | ID: mdl-37897100

ABSTRACT

BACKGROUND: Several published systematic reviews have drawn conflicting conclusions on the effect of abnormal body weight (i.e. being underweight, overweight or obese) on outcomes following stroke. The 'obesity paradox' seen in several diseases (wherein obesity, often associated with mortality and morbidity, appears to be protective and improve outcomes) may be evident after stroke, but inconsistent results of existing reviews, and the issue of being underweight, are worth investigating further. AIMS: To better understand the impact of body weight on prognosis after stroke, we aimed to answer the following research question: What is the effect of abnormal body weight (underweight, overweight, or obesity) on mortality and functional recovery in adults after stroke? SUMMARY OF REVIEW: We conducted an umbrella review to synthesize existing evidence on the effects of abnormal body weight on stroke outcomes. We searched Cumulated Index to Nursing and Allied Health Literature (CINAHL) Complete, COCHRANE Database of Systematic Reviews, PubMed, Medline, PEDro, and EMBASE Classic + EMBASE, from inception until 28 February 2023. Seven systematic reviews (1,136,929 participants) from 184 primary studies (counting duplicates) were included. While the risk of mortality increases with being underweight (body mass index (BMI) < 18.5 kg/m2), excess body weight (being overweight (BMI = 25-29.9 kg/m2) or obese (BMI > 30 kg/m2)) is associated with reduced mortality. The impact of abnormal body weight on functional recovery is less clear; data from studies of being underweight are associated with poor functional outcomes while those from studies of excess body weight are inconclusive. CONCLUSION: Abnormal body weight effects post-stroke outcomes and should be considered in clinical decision-making, prognostic research, and clinical trials of rehabilitation interventions. The "obesity paradox" is evident after stroke, and excess body weight is associated with reduced mortality compared to normal body weight. It is recommended that body weight is routinely recorded for stroke patients, and further research, including well-designed cohort studies with reliable weight data, is needed to further investigate the impact of body weight and distribution on post-stroke outcomes.


Subject(s)
Overweight , Stroke , Adult , Humans , Overweight/complications , Thinness , Systematic Reviews as Topic , Obesity/complications , Body Mass Index
2.
J Mov Disord ; 16(3): 307-320, 2023 Sep.
Article in English | MEDLINE | ID: mdl-37558234

ABSTRACT

OBJECTIVE: To systematically review and critically evaluate literature on spatiotemporal gait deviations in individuals with premanifest and manifest Huntington's Disease (HD) in comparison with healthy cohorts. METHODS: We conducted a systematic review, guided by the Joanna Briggs Institute's Manual for Evidence Synthesis and pre-registered with the International Prospective Register of Systematic Reviews. Eight electronic databases were searched. Studies comparing spatiotemporal footstep parameters in adults with premanifest and manifest HD to healthy controls were screened, included and critically appraised by independent reviewers. Data on spatiotemporal gait changes and variability were extracted and synthesised. Meta-analysis was performed on gait speed, cadence, stride length and stride length variability measures. RESULTS: We screened 2,721 studies, identified 1,245 studies and included 25 studies (total 1,088 participants). Sample sizes ranged from 14 to 96. Overall, the quality of the studies was assessed as good, but reporting of confounding factors was often unclear. Meta-analysis found spatiotemporal gait deviations in participants with HD compared to healthy controls, commencing in the premanifest stage. Individuals with premanifest HD walk significantly slower (-0.17 m/s; 95% confidence interval [CI] [-0.22, -0.13]), with reduced cadence (-6.63 steps/min; 95% CI [-10.62, -2.65]) and stride length (-0.09 m; 95% CI [-0.13, -0.05]). Stride length variability was also increased in premanifest cohorts by 2.18% (95% CI [0.69, 3.68]), with these changes exacerbated in participants with manifest disease. CONCLUSION: Findings suggest individuals with premanifest and manifest HD display significant spatiotemporal footstep deviations. Clinicians could monitor individuals in the premanifest stage of disease for gait changes to identify the onset of Huntington's symptoms.

3.
J Med Internet Res ; 24(3): e26515, 2022 03 09.
Article in English | MEDLINE | ID: mdl-35262498

ABSTRACT

BACKGROUND: The COVID-19 pandemic has required widespread and rapid adoption of information and communications technology (ICT) platforms by health professionals. Transitioning health programs from face-to-face to remote delivery using ICT platforms has introduced new challenges. OBJECTIVE: The objective of this review is to scope for ICT-delivered health programs implemented within the community health setting in high-income countries and rapidly disseminate findings to health professionals. METHODS: The Joanna Briggs Institute's scoping review methodology guided the review of the literature. RESULTS: The search retrieved 7110 unique citations. Each title and abstract was screened by at least two reviewers, resulting in 399 citations for full-text review. Of these 399 citations, 72 (18%) were included. An additional 27 citations were identified through reviewing the reference lists of the included studies, resulting in 99 citations. Citations examined 83 ICT-delivered programs from 19 high-income countries. Variations in program design, ICT platforms, research design, and outcomes were evident. CONCLUSIONS: Included programs and research were heterogeneous, addressing prevalent chronic diseases. Evidence was retrieved for the effectiveness of nurse and allied health ICT-delivered programs. Findings indicated that outcomes for participants receiving ICT-delivered programs, when compared with participants receiving in-person programs, were either equivalent or better. Gaps included a paucity of co-designed programs, qualitative research around group programs, programs for patients and carers, and evaluation of cost-effectiveness. During COVID-19 and beyond, health professionals in the community health setting are encouraged to build on existing knowledge and address evidence gaps by developing and evaluating innovative ICT-delivered programs in collaboration with consumers and carers.


Subject(s)
COVID-19 , Public Health , Biomedical Technology , COVID-19/epidemiology , COVID-19/prevention & control , Developed Countries , Humans , Pandemics/prevention & control , SARS-CoV-2
4.
Chronic Illn ; 18(2): 410-425, 2022 06.
Article in English | MEDLINE | ID: mdl-33401942

ABSTRACT

OBJECTIVES: To explore the perspectives of general practitioners (GPs) on the identification and management of people, including those from ethnic minority groups, with Heart Failure with Preserved Ejection Fraction (HFpEF). METHODS: Qualitative study. Semi-structured, face-to-face or telephone interviews and focus groups were conducted with 35 GPs in England, which were audio-recorded and transcribed verbatim. Framework analysis was used to manage and interpret data. RESULTS: Themes presented reflect four inter-related challenges: GPs' 1) lack of understanding HFpEF, impacting on 2) difficulties in communicating the diagnosis, leading to 3) uncertainty in managing people with HFpEF, further hindered by (4) discontinuity across the primary/secondary interface. All were considered more challenging by GPs when managing people from different cultures and languages. DISCUSSION: HFpEF is not well understood by GPs, leading to diagnostic difficulty, management uncertainty and potential inequity in care offered. People with HFpEF are seen as complex, with multiple long-term conditions and requiring personalised care. Challenges in their management occur across the healthcare system. This study has identified learning needs for GPs around identification and on-going support for people with HFpEF in primary care. It will contribute to the development of more flexible and patient-centred pathways across the primary/secondary care interface.


Subject(s)
General Practitioners , Heart Failure , Attitude of Health Personnel , Ethnicity , Heart Failure/therapy , Humans , Minority Groups , Primary Health Care , Qualitative Research , Stroke Volume
5.
Article in English | MEDLINE | ID: mdl-34887313

ABSTRACT

BACKGROUND: Community-based and home-based palliative and end-of-life care (PEoLC) services, often underpinned by primary care provision, are becoming increasingly popular. One of the key challenges associated with them is their timely initiation. The latter requires an accurate enough prediction of how close to death a patient is. METHODS: Using 'realist synthesis' tools, this review sought to develop explanations of how primary care and community PEoLC programmes generate their outcomes, with the explanations presented as context-mechanism-outcome configurations. Medline, Embase, CINAHL, PsycINFO, Web of Science, ASSIA, Sociological Abstracts and SCIE Social Care Online were originally searched. A multistage process of focusing the review was employed, with timely identification of the EoL stage and timely initiation of associated services representing the final review focus. Synthesised sources included 21 full-text documents and 324 coded abstracts, with 253 'core contents' abstracts generating >800 codes. RESULTS: Numerous PEoLC policies and programmes are embedded in a framework of Preparation and Planning for Death and Dying, with identification of the dying stage setting in motion key systems and services. This is challenged by: (1) accumulated evidence demonstrating low accuracy of prognostic judgements; (2) many individuals' orientation towards Living and Hope; (3) expanding grey zones between palliative and curative care; (4) the complexity of referral decisions; (5) the loss of pertinent information in hierarchical relationships and (6) the ambiguous value of having 'more time'. CONCLUSION: Prioritising temporal criteria in initiating PEoLC services is not sufficiently supported by current evidence and can have significant unintended consequences. PROSPERO REGISTRATION NUMBER: CRD42018097218.

6.
Age Ageing ; 50(1): 153-160, 2021 01 08.
Article in English | MEDLINE | ID: mdl-32902637

ABSTRACT

AIM: to investigate changes in knee-extension strength and physical function in older adults during and after acute hospital admission, and the contributions of illness severity, frailty and sedentary activity to changes in knee-extension strength. METHODS: prospective repeated-measures cohort study on a sample of participants aged ≥75 recruited within 24 hours of acute hospital admission. Knee-extension, grip strength and functional mobility (de Morton Mobility Index, DEMMI) were measured at recruitment, day 7 (or discharge if earlier), and at follow-up 4-6 weeks later. During the first 7 days, continuous measurement of physical activity and daily measurements of muscle strength were taken. Participants recalled the functional ability they had 2-weeks before admission and self-reported it at follow-up (Barthel Index, BI). RESULTS: sixty-five of 70 participants (median age 84 years) had at least one repeated measure of muscle strength in hospital. Knee-extension strength declined during hospitalisation by 11% (P < 0.001), but did not change post-hospitalisation (P = 0.458). Grip strength did not change during hospitalisation (P = 0.665) or from discharge to follow-up (P = 0.508). General functional ability (BI) deteriorated between 2 weeks before admission and follow-up (P < 0.001). Functional mobility (DEMMI) improved during hospitalisation (P < 0.001), but did not change post-hospitalisation (P = 0.508). A repeated-measures mixed model showed that greater loss in knee-extension strength during hospitalisation was associated with increased sedentary time, frailty and baseline strength and lower baseline inflammatory levels. CONCLUSIONS: our observations add to a growing body of evidence on potential risk factors for hospital-associated deconditioning.


Subject(s)
Hospitalization , Mobility Limitation , Aged , Cohort Studies , Geriatric Assessment , Humans , Muscle Strength , Prospective Studies
7.
Br J Gen Pract ; 70(701): e880-e889, 2020 12.
Article in English | MEDLINE | ID: mdl-33139334

ABSTRACT

BACKGROUND: About half of all people with heart failure have heart failure with preserved ejection fraction (HFpEF), in which the heart is stiff. This type of heart failure is more common in older people with a history of hypertension, obesity, and diabetes mellitus. Patients with HFpEF are often managed in primary care, sometimes in collaboration with specialists. Knowledge about how best to manage this growing population is limited, and there is a pressing need to improve care for these patients. AIM: To explore clinicians' and patients'/carers' perspectives and experiences about the management of HFpEF to inform the development of an improved model of care. DESIGN AND SETTING: A multiperspective qualitative study involving primary and secondary care settings across the east of England, Greater Manchester, and the West Midlands. METHOD: Semi-structured interviews and focus groups were conducted. Transcribed data were analysed using framework analysis and informed by the normalisation process theory (NPT). RESULTS: In total, 50 patients, nine carers/relatives, and 73 clinicians were recruited. Difficulties with diagnosis, unclear illness perceptions, and management disparity were identified as important factors that may influence management of HFpEF. The NPT construct of coherence reflected what participants expressed about the need to improve the identification, understanding, and awareness of this condition in order to improve care. CONCLUSION: There is a pressing need to raise the public and clinical profile of HFpEF, develop a clear set of accepted practices concerning its management, and ensure that systems of care are accessible and attuned to the needs of patients with this condition.


Subject(s)
Heart Failure , Hypertension , Aged , England , Heart Failure/diagnosis , Heart Failure/therapy , Humans , Qualitative Research , Stroke Volume
8.
Risk Manag Healthc Policy ; 13: 285-293, 2020.
Article in English | MEDLINE | ID: mdl-32280291

ABSTRACT

PURPOSE: Details on adequate care and prevalence of depression in long-term stroke aftercare are limited. We aimed to determine long-term depression rates after stroke and to test for an association between depression and inadequate screening, socio-economic complications and lack of sub-optimal care. PATIENTS AND METHODS: In this cross-sectional study, 57 patients were re-invited into the clinic 2-3 years after stroke. Patients were interviewed about recalled screening concerning depression and unmet needs. Depression, the patient's social situation, and confounders were assessed by standardized scores. RESULTS: In our study, 20% (n = 11) of patients were classified as depressed by the HDRS-17 score result. However, only 36% of all patients recalled to have been previously screened for depression and only 43% of those patients also recalled out-patient screening. Patients classified as depressed reported significantly lower recalled screening rates (9% vs 43%; p = 0.036) and higher rates of self-reported unmet need with emotional problems (72% vs 18%; p < 0.001). Depression in our study was further associated with a worse socio-economic situation, fewer social contacts, unmet needs with regard to emotional problems and higher rates of recommendations to apply for additional social support. CONCLUSION: Our data suggest that systematic out-patient screening for depression is lacking in stroke aftercare. Furthermore, the high rate of unmet emotional needs, the poor socio-economic situation and the higher rates of recommendations for social counselling and application for benefits suggest an undersupply of care in the out-patient setting that is more prominent in patients with depression and warrants further studies to investigate the underlying causes.

9.
ERJ Open Res ; 6(1)2020 Jan.
Article in English | MEDLINE | ID: mdl-32083112

ABSTRACT

Healthcare service and patient barriers contribute to low referral to and uptake of pulmonary rehabilitation (PR). Solutions should support skilled clinician-patient conversations and span primary care-PR boundaries to prevent disjointed working. http://bit.ly/2PVKHZf.

10.
Physiotherapy ; 107: 161-168, 2020 06.
Article in English | MEDLINE | ID: mdl-32026816

ABSTRACT

OBJECTIVES: To identify unanswered questions for physiotherapy research and help set and prioritise the top 10 generic research priorities for the UK physiotherapy profession; updating previous clinical condition- specific priorities to include patient and carer perspectives, and reflect changes in physiotherapy practice, service provision and new technologies. DESIGN: The James Lind Alliance (JLA) Priority Setting Partnership (PSP) methodology was adopted, utilising evidence review, survey and consensus methods. PARTICIPANTS: Anyone with experience and/or an interest in UK physiotherapy: patients, carers, members of the public, physiotherapists, student physiotherapists, other healthcare professionals, researchers, educators, service providers, commissioners and policy makers. RESULTS: Five hundred and ten respondents (50% patients, carers or members of the public) identified 2152 questions (termed "uncertainties"). Sixty-five indicative questions were developed from the uncertainties using peer reviewed thematic analysis. These were ranked in a second national survey (1,020 responses (62% were complete)). The top 25 questions were reviewed in a final prioritisation workshop using an adapted nominal group technique. The top 10 research priorities focused on optimisation (top priority); access; effectiveness; patient and carer knowledge, experiences, needs and expectations; supporting patient engagement and self-management; diagnosis and prediction. CONCLUSIONS: This study is currently the UK's most inclusive consultation exercise to identify patients'and healthcare professionals'priorities for physiotherapy research. The exercise deliberately sought to capture generic issues relevant to all specialisms within physiotherapy. The research priorities identified a range of gaps in existing evidence to inform physiotherapy policy and practice. The results will assist research commissioning bodies and inform funding decisions and strategy.


Subject(s)
Biomedical Research , Health Priorities , Physical Therapy Specialty , Research Design , Adolescent , Adult , Aged , Aged, 80 and over , Child , Consensus , Female , Humans , Male , Middle Aged , United Kingdom , Young Adult
11.
BMC Neurol ; 19(1): 220, 2019 Sep 06.
Article in English | MEDLINE | ID: mdl-31492151

ABSTRACT

BACKGROUND: Stroke patients are often affected by long-term disabilities with needs concerning social issues. There is relatively little consideration of social recovery of patients and the support required to return to work, receive social benefits, participate in daily life activities, maintain contact with family and friends and to organize financial affairs. In our study we aimed to investigate if existing tools record social needs adequately. We analyzed the current provision of social support provided in long-term care after stroke and whether unmet social needs were associated with quality of life, caregiver burden, overall function and degree of disability. METHODS: Our analysis is part of the Managing Aftercare of Stroke study (MAS-I), a cross-sectional exploratory study of patient needs 2-3 years after initial stroke. Assessment tools included the Nikolaus-score (social situation), the EuroQoL (quality of life), the German Burden Scale for Family Caregivers (caregiver burden), the modified Rankin Scale (disability / dependence), Stroke Impact Scale (function and degree of disability) and the Stroke Survivor Needs Questionnaire (unmet needs). RESULTS: Overall 57 patients were included in MAS-I, with ten patients classified in urgent need of socio-economic support according to the Nikolaus-score. Patients with lower than normal Nikolaus-score had a higher degree of disability. Thirty percent of all patients had never received professional social support. Social worker contact happened mostly during the stay in acute hospital or rehabilitation institution. Only four patients (11%) reported long-term support after discharge. Apart from social worker contact during acute care, 43% of patients had unmet needs in the long-term aftercare. Forty percent of all patients included in MAS-I were recommended for social work intervention after an in-depth analysis of their situation. Finally, we saw that unmet social needs were associated with lower quality of life and higher caregiver burden. CONCLUSIONS: Our data suggest significant unmet needs in social care in long-term stroke patients. Screening tools for unmet social needs such as the Nikolaus-score do not holistically report patients' needs. TRIAL REGISTRATION: Clinicaltrials.Gov NCT02320994 . Registered 19 December 2014 (retrospectively registered).


Subject(s)
Quality of Life , Social Support , Social Work , Stroke/psychology , Aged , Aged, 80 and over , Caregivers , Cross-Sectional Studies , Disabled Persons/statistics & numerical data , Female , Humans , Long-Term Care , Male , Middle Aged , Patient Discharge , Retrospective Studies , Stroke Rehabilitation , Surveys and Questionnaires , Survivors
12.
BMC Cancer ; 19(1): 586, 2019 Jun 14.
Article in English | MEDLINE | ID: mdl-31200676

ABSTRACT

BACKGROUND: Novel diagnostic triage and testing strategies to support early detection of cancer could improve clinical outcomes. Most apparently promising diagnostic tests ultimately fail because of inadequate performance in real-world, low prevalence populations such as primary care or general community populations. They should therefore be systematically evaluated before implementation to determine whether they lead to earlier detection, are cost-effective, and improve patient safety and quality of care, while minimising over-investigation and over-diagnosis. METHODS: We performed a systematic scoping review of frameworks for the evaluation of tests and diagnostic approaches. RESULTS: We identified 16 frameworks: none addressed the entire continuum from test development to impact on diagnosis and patient outcomes in the intended population, nor the way in which tests may be used for triage purposes as part of a wider diagnostic strategy. Informed by these findings, we developed a new framework, the 'CanTest Framework', which proposes five iterative research phases forming a clear translational pathway from new test development to health system implementation and evaluation. CONCLUSION: This framework is suitable for testing in low prevalence populations, where tests are often applied for triage testing and incorporated into a wider diagnostic strategy. It has relevance for a wide range of stakeholders including patients, policymakers, purchasers, healthcare providers and industry.


Subject(s)
Early Detection of Cancer/methods , Neoplasms/diagnosis , Humans , Models, Biological , Triage
13.
BMJ Open ; 9(1): e024806, 2019 01 21.
Article in English | MEDLINE | ID: mdl-30670521

ABSTRACT

INTRODUCTION: Chronic obstructive pulmonary disease (COPD) is a progressive lung disease associated with breathlessness, inability to exercise, frequent infections, hospitalisation and reduced quality of life. Pulmonary rehabilitation (PR), providing supervised exercise and education, is an effective and cost-effective treatment for COPD but is significantly underused. Interventions to improve referral and uptake have been tested and some positive results reported. However, interventions are diverse and no clear recommendations for practice can be made. This study aims to understand the challenges to referral and uptake in primary care, where most referrals originate, and to develop a flexible toolkit of resources to support referral and uptake to PR in primary care in the UK. METHODS AND ANALYSIS: This is a mixed methods study informed by normalisation process theory and burden of treatment theory. In the first phase, general practitioners, practice nurses and PR providers will be invited to complete an online survey to inform a broad exploration of the topic areas. In phase 2 interviews and focus groups will be conducted with patients, healthcare professionals (HCP) in primary care, PR providers and commissioners to gain an in-depth understanding of the issues and needs. Toolkit development in phase 3 will draw together the learning from phases 1 and 2 and employ an iterative development process to build the toolkit jointly with patients and HCPs. It will be tested in primary care for usability and acceptability. ETHICS AND DISSEMINATION: The study has ethical and Health Research Authority approval (Research Ethics Committee reference number 17/EE/0136). It is registered with the International Standard Registered Clinical/Social Study Number (ISRCTN) registry (trial ID: ISRCTN20669629, assignment date 20 March 2018, trial start date 1 April 2016). Dissemination will be aimed at patients, carers/families, service providers, commissioners and national interest groups. Methods will include conferences, presentations, academic publications and plain English reports and will be supported by the British Lung Foundation. TRIAL REGISTRATION NUMBER: ISRCTN20669629 ; Pre-results.


Subject(s)
Exercise , Patient Education as Topic , Pulmonary Disease, Chronic Obstructive/rehabilitation , Cost-Benefit Analysis , Focus Groups , Humans , Primary Health Care , Qualitative Research , Quality of Life , Referral and Consultation , Research Design , Surveys and Questionnaires
14.
Int J Chron Obstruct Pulmon Dis ; 13: 3571-3586, 2018.
Article in English | MEDLINE | ID: mdl-30464439

ABSTRACT

Pulmonary rehabilitation (PR) reduces the number and duration of hospital admissions and readmissions, and improves health-related quality of life in patients with COPD. Despite clinical guideline recommendations, under-referral and limited uptake to PR contribute to poor treatment access. We reviewed published literature on the effectiveness of interventions to improve referral to and uptake of PR in patients with COPD when compared to standard care, alternative interventions, or no intervention. The review followed recognized methods. Search terms included "pulmonary rehabilitation" AND "referral" OR "uptake" applied to MEDLINE, EMBASE, CINAHL, PsycINFO, ASSIA, BNI, Web of Science, and Cochrane Library up to January 2018. Titles, abstracts, and full papers were reviewed independently and quality appraised. The protocol was registered (PROSPERO # 2016:CRD42016043762). We screened 5,328 references. Fourteen papers met the inclusion criteria. Ten assessed referral and five assessed uptake (46,146 patients, 409 clinicians, 82 hospital departments, 122 general practices). One was a systematic review which assessed uptake. Designs, interventions, and scope of studies were diverse, often part of multifaceted evidence-based management of COPD. Examples included computer-based prompts at practice nurse review, patient information, clinician education, and financial incentives. Four studies reported statistically significant improvements in referral (range 3.5%-36%). Two studies reported statistically significant increases in uptake (range 18%-21.5%). Most studies had methodological and reporting limitations. Meta-analysis was not conducted due to heterogeneity of study designs. This review demonstrates the range of approaches aimed at increasing referral and uptake to PR but identifies limited evidence of effectiveness due to the heterogeneity and limitations of study designs. Research using robust methods with clear descriptions of intervention, setting, and target population is required to optimize access to PR across a range of settings.


Subject(s)
Exercise Therapy/methods , Lung/physiopathology , Patient Education as Topic/methods , Practice Patterns, Physicians' , Pulmonary Disease, Chronic Obstructive/rehabilitation , Referral and Consultation , Aged , Aged, 80 and over , Attitude of Health Personnel , Education, Medical, Continuing/methods , Female , Health Services Research , Humans , Inservice Training/methods , Male , Middle Aged , Physician Incentive Plans , Pulmonary Disease, Chronic Obstructive/diagnosis , Pulmonary Disease, Chronic Obstructive/physiopathology , Recovery of Function , Reminder Systems , Treatment Outcome
16.
PLoS One ; 13(2): e0192533, 2018.
Article in English | MEDLINE | ID: mdl-29466383

ABSTRACT

OBJECTIVE: To describe and explain stroke survivors and informal caregivers' experiences of primary care and community healthcare services. To offer potential solutions for how negative experiences could be addressed by healthcare services. DESIGN: Systematic review and meta-ethnography. DATA SOURCES: Medline, CINAHL, Embase and PsycINFO databases (literature searched until May 2015, published studies ranged from 1996 to 2015). ELIGIBILITY CRITERIA: Primary qualitative studies focused on adult community-dwelling stroke survivors' and/or informal caregivers' experiences of primary care and/or community healthcare services. DATA SYNTHESIS: A set of common second order constructs (original authors' interpretations of participants' experiences) were identified across the studies and used to develop a novel integrative account of the data (third order constructs). Study quality was assessed using the Critical Appraisal Skills Programme checklist. Relevance was assessed using Dixon-Woods' criteria. RESULTS: 51 studies (including 168 stroke survivors and 328 caregivers) were synthesised. We developed three inter-dependent third order constructs: (1) marginalisation of stroke survivors and caregivers by healthcare services, (2) passivity versus proactivity in the relationship between health services and the patient/caregiver dyad, and (3) fluidity of stroke related needs for both patient and caregiver. Issues of continuity of care, limitations in access to services and inadequate information provision drove perceptions of marginalisation and passivity of services for both patients and caregivers. Fluidity was apparent through changing information needs and psychological adaptation to living with long-term consequences of stroke. LIMITATIONS: Potential limitations of qualitative research such as limited generalisability and inability to provide firm answers are offset by the consistency of the findings across a range of countries and healthcare systems. CONCLUSIONS: Stroke survivors and caregivers feel abandoned because they have become marginalised by services and they do not have the knowledge or skills to re-engage. This can be addressed by: (1) increasing stroke specific health literacy by targeted and timely information provision, and (2) improving continuity of care between specialist and generalist services. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO 2015:CRD42015026602.


Subject(s)
Attitude , Caregivers/psychology , Community Health Services , Primary Health Care , Stroke/nursing , Stroke/psychology , Survivors , Anthropology, Cultural , Humans
17.
Eur Stroke J ; 3(3): 237-245, 2018 Sep.
Article in English | MEDLINE | ID: mdl-31008354

ABSTRACT

INTRODUCTION: Detailed data on the long-term consequences and treatment of stroke are scarce. We aimed to assess the needs and disease burden of community-dwelling stroke patients and their carers and to compare their treatment to evidence-based guidelines by a stroke neurologist. METHODS: We invited long-term stroke patients from two previous acute clinical studies (n = 516) in Berlin, Germany to participate in an observational, cross-sectional study. Participants underwent a comprehensive interview and examination using the Post-Stroke Checklist and validated standard measures of: self-reported needs, quality of life, overall outcome, spasticity, pain, aphasia, cognition, depression, secondary prevention, social needs and caregiver burden. RESULTS: Fifty-seven participants (median initial National Institutes of Health Stroke Scale score 10 interquartile range 4-12.75) consented to assessment (median 41 months (interquartile range 36-50) after stroke. Modified Rankin Scale was 2 (median; interquartile range 1-3), EuroQoL index value was 0.81 (median; interquartile range 0.70-1.00). The frequencies for disabilities in the major domains were: spasticity 35%; cognition 61%; depression 20%; medication non-compliance 14%. Spasticity (p = 0.008) and social needs (p < 0.001) had the strongest impact on quality of life. The corresponding items in the Post-Stroke Checklist were predictive for low mood (p < 0.001), impaired cognition (p = 0.015), social needs (p = 0.005) and caregiver burden (p = 0.031). In the comprehensive interview, we identified the following needs: medical review (30%), optimization of pharmacotherapy (18%), outpatient therapy (47%) and social work input (33%). CONCLUSION: These results suggest significant unmet needs and gaps in health and social care in long-term stroke patients. Further research to develop a comprehensive model for managing stroke aftercare is warranted.Clinical Trial Registration: clinicaltrials.gov NCT02320994.

18.
PLoS Biol ; 15(3): e2001307, 2017 03.
Article in English | MEDLINE | ID: mdl-28282371

ABSTRACT

Despite the potential benefits of sequential designs, studies evaluating treatments or experimental manipulations in preclinical experimental biomedicine almost exclusively use classical block designs. Our aim with this article is to bring the existing methodology of group sequential designs to the attention of researchers in the preclinical field and to clearly illustrate its potential utility. Group sequential designs can offer higher efficiency than traditional methods and are increasingly used in clinical trials. Using simulation of data, we demonstrate that group sequential designs have the potential to improve the efficiency of experimental studies, even when sample sizes are very small, as is currently prevalent in preclinical experimental biomedicine. When simulating data with a large effect size of d = 1 and a sample size of n = 18 per group, sequential frequentist analysis consumes in the long run only around 80% of the planned number of experimental units. In larger trials (n = 36 per group), additional stopping rules for futility lead to the saving of resources of up to 30% compared to block designs. We argue that these savings should be invested to increase sample sizes and hence power, since the currently underpowered experiments in preclinical biomedicine are a major threat to the value and predictiveness in this research domain.


Subject(s)
Biomedical Research , Research Design
19.
BMC Neurol ; 16: 111, 2016 Jul 20.
Article in English | MEDLINE | ID: mdl-27439602

ABSTRACT

BACKGROUND: Previous studies examining social work interventions in stroke often lack information on content, methods and timing over different phases of care including acute hospital, rehabilitation and out-patient care. This limits our ability to evaluate the impact of social work in multidisciplinary stroke care. We aimed to quantify social-work-related support in stroke patients and their carers in terms of timing and content, depending on the different phases of stroke care. METHODS: We prospectively collected and evaluated data derived from a specialized "Stroke-Service-Point" (SSP); a "drop in" center and non-medical stroke assistance service, staffed by social workers and available to all stroke patients, their carers and members of the public in the metropolitan region of Berlin, Germany. RESULTS: Enquiries from 257 consenting participants consulting the SSP between March 2010 and April 2012 related to out-patient and in-patient services, therapeutic services, medical questions, medical rehabilitation, self-help groups and questions around obtaining benefits. Frequency of enquiries for different topics depended on whether patients were located in an in-patient or out-patient setting. The majority of contacts involved information provision. While the proportion of male and female patients with stroke was similar, about two thirds of the carers contacting the SSP were female. CONCLUSION: The social-work-related services provided by a specialized center in a German metropolitan area were diverse in terms of topic and timing depending on the phase of stroke care. Targeting the timing of interventions might be important to increase the impact of social work on patient's outcome.


Subject(s)
Caregivers/psychology , Social Work , Stroke Rehabilitation , Adult , Berlin , Female , Germany , Humans , Male , Middle Aged , Outpatients , Prospective Studies , Social Support
20.
BMJ Open ; 5(6): e007101, 2015 Jun 01.
Article in English | MEDLINE | ID: mdl-26038354

ABSTRACT

OBJECTIVE: There were two main objectives: to describe and compare clinical outcomes and Patient-Reported Outcome Measures (PROMs) collected using standardised procedures across the European Registers of Stroke (EROS) at 3 and 12 months after stroke; and to examine the relationship between patients' Health-Related Quality of Life (HRQoL) at 3 months after stroke and survival up to 1 year across the 5 populations. DESIGN: Analysis of data from population-based stroke registers. SETTING: European populations in Dijon (France); Kaunas (Lithuania); London (UK); Warsaw (Poland) and Sesto Fiorentino (Italy). PARTICIPANTS: Patients with ischaemic or intracerebral haemorrhage (ICH) stroke, registered between 2004 and 2006. OUTCOME MEASURES: (1) HRQoL, assessed by the physical component summary (PCS) and mental component summary (MCS) of the Short-Form Health Survey (SF-12), mapped into the EQ-5D to estimate responses on 5 dimensions (mobility, activity, pain, anxiety and depression, and self-care) and utility scores. (2) Mortality within 3 months and within 1 year of stroke. RESULTS: Of 1848 patients, 325 were lost to follow-up and 500 died within a year of stroke. Significant differences in mortality, HRQoL and utility scores were found, and remained after adjustments. Kaunas had an increased risk of death; OR 2.34, 95% CI (1.32 to 4.14) at 3 months after stroke in Kaunas, compared with London. Sesto Fiorentino had the highest adjusted PCS: 43.54 (SD=0.96), and Dijon had the lowest adjusted MCS: 38.67 (SD=0.67). There are strong associations between levels of the EQ-5D at 3 months and survival within the year. The trend across levels suggests a dose-response relationship. CONCLUSIONS: The study demonstrated significant variations in survival, HRQoL and utilities across populations that could not be explained by stroke severity and sociodemographic factors. Strong associations between HRQoL at 3 months and survival to 1 year after stroke were identified.


Subject(s)
Health Status , Quality of Life/psychology , Registries , Stroke/mortality , Aged , Aged, 80 and over , Anxiety/psychology , Depression/psychology , Europe , Female , Humans , Male , Middle Aged , Mobility Limitation , Pain/psychology , Patient Outcome Assessment , Stroke/psychology
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