Exploring dimensions of quality-of-life in survivors of stroke with communication disabilities - a brief report.

BACKGROUND: People with communication disabilities post-stroke have poor quality-of-life. OBJECTIVES: We aimed to explore the association of self-reported communication disabilities with different dimensions of quality-of-life between 90 and 180 days post-stroke. METHODS: Cross-sectional survey data were obtained between 90 and 180 days post-stroke from registrants in the Australian Stroke Clinical Registry recruited from three hospitals in Queensland. The usual follow-up survey included the EQ5D-3L. Responses to the Hospital Anxiety and Depression Scale, and extra questions (e.g. communication disabilities) were also collected. We used χ2 statistics to determine differences. RESULTS: Overall, 244/647 survivors completed the survey. Respondents with communication disabilities (n = 72) more often reported moderate to extreme problems in all EQ5D-3L dimensions, than those without communication disabilities (n = 172): anxiety or depression (74% vs 40%, p < .001), pain or discomfort (58% vs 39%, p = .006), self-care (46% vs 18%, p < .001), usual activities (77% vs 49%, p < .001), and mobility (68% vs 35%, p < .001). Respondents with communication disabilities reported less fatigue (66% vs 89%, p < .001), poorer cognitive skills (thinking) (16% vs 1%, p < .001) and lower social participation (31% vs 6%, p < .001) than those without communication disabilities. CONCLUSIONS: Survivors of stroke with communication disabilities are more negatively impacted across different dimensions of quality-of-life (as reported between 90 and 180 days post-stroke) compared to those without communication disabilities. This highlights the need for timely and on-going comprehensive multidisciplinary person-centered support.

In search of Kipling's six honest serving men in upper limb rehabilitation: within participant case-crossover experiment nested within a web-based questionnaire.

PURPOSE: In search of Kipling's six honest serving men in upper limb rehabilitation after stroke, we sought to investigate clinicians' perspective of when and where to begin therapy, how much and what therapy to provide, and who and why (or not) to provide therapy.Materials & methods: Within-participant case cross-over experiments were nested within an anonymous web-based questionnaire (21 questions, three cases). Graph theory-based voting to produce ranked ordered lists and mixed-effect logistic regression were performed. RESULTS: In total, 225 Australian stroke clinicians responded: 53% occupational therapists, 61% working in acute/inpatient stroke setting. Most respondents indicated they did not have a protocol/expectation regarding when (62%), how much (84%) or what (60%) therapy to provide in their setting. Respondents ranked 24-h to 7-days post-stroke as the optimal time to commence therapy, and 30- to 60-min per day as the optimal dose to provide. Within-participant experiments demonstrated that greater motor recovery as time progressed increased the odds of offering therapy, while lack of motor recovery, shoulder pain, neurological decline and sole therapist reduced the odds. CONCLUSION: We need to develop an evidence base concerning Kipling's six honest serving men and equip clinicians with clinical decision-making skills aligned with this focus.IMPLICATIONS FOR REHABILITATIONMost clinicians did not have access to a protocol / clinical pathway which defines when, how much and what upper limb therapy to provide after stroke, which may be improved by providing individual clinicians with organisational support to make therapy decisions.To improve the personalisation of upper limb rehabilitation in clinical practice, we need to understand when and where after stroke to begin therapy, how much and what therapy to provide, as well as who and why (clinical decision-making) to provide therapy.Clinicians perceive clinical trials as successful if the therapy can demonstrate recovery that is greater than a minimal clinical important difference (MCID).

Sex differences in quality of life after stroke were explained by patient factors, not clinical care: evidence from the Australian Stroke Clinical Registry.

BACKGROUND AND PURPOSE: Women may receive stroke care less often than men. We examined the contribution of clinical care on sex differences and health-related quality of life (HRQoL) after stroke. METHODS: We included first-ever strokes registered in the Australian Stroke Clinical Registry (2010-2014) with HRQoL assessed between 90 and 180 days after onset (EQ-5D-3L instrument) that were linked to hospital administrative data (up to 2013). Study factors included sociodemographics, comorbidities, walking ability on admission (stroke severity proxy) and clinical care (e.g. stroke unit care). Responses to the EQ-5D-3L were transformed into a total utility value (-0.516 'worse than death' to 1 'best' health). Quantile regression models, adjusted for confounding factors, were used to determine median differences (MD) in utility scores by sex. RESULTS: Approximately 60% (6852/11 418) of stroke survivors had an EQ-5D-3L assessment (median 139 days; 44% female). Compared with men, women were older (median age 77.1 years vs. men 71.2 years) and fewer could walk on admission (37.9% vs. men 46.1%, P < 0.001). Women had lower utility values than men, and the difference was explained by age and stroke severity, but not clinical care [MDadjusted = -0.039, 95% confidence interval: -0.056, -0.021]. Poorer HRQoL was observed in younger men (aged <65 years), particularly those with more comorbidities, and in older women (aged ≥75 years). CONCLUSIONS: Stroke severity and comorbidities contribute to the poorer HRQoL in young men and older women. Further studies are needed to understand age-sex interaction to better inform treatments for different subgroups and ensure evidence-based treatments to reduce the severity of stroke are prioritized.

Protocol for evaluation of enhanced models of primary care in the management of stroke and other chronic disease (PRECISE): A data linkage healthcare evaluation study.

INTRODUCTION: The growing burden of chronic diseases means some governments have been providing financial incentives for multidisciplinary care and self-management support delivered within primary care. Currently, population-based evaluations of the effectiveness of these policies are lacking. AIM: To outline the methodological approach for our study that is designed to evaluate the effectiveness (including cost) of primary care policies for chronic diseases in Australia using stroke as a case study. METHODS: Person-level linkages will be undertaken between registrants from the Australian Stroke Clinical Registry (AuSCR) and (i) Government-held Medicare Australia claims data, to identify receipt or not of chronic disease management and care coordination primary care items; (ii) state government-held hospital data, to define outcomes; and (iii) government-held pharmaceutical and aged care claims data, to define covariates. N=1500 randomly selected AuSCR registrants will be sent surveys to obtain patient experience information. In Australia, unique identifiers are unavailable. Therefore, personal-identifiers will be submitted to government data linkage units. Researchers will merge the de-identified datasets for analysis using a project identifier. An economic evaluation will also be undertaken. ANALYSIS: The index event will be the first stroke recorded in the AuSCR. Multivariable competing risks Poisson regression for multiple events, adjusted by a propensity score, will be used to test for differences in the rates of hospital presentations and medication adherence for different care (policy) types. Our estimated sample size of 25,000 patients will provide 80% estimated power (ɑ>0.05) to detect a 6-8% difference in rates. The incremental costs per Quality-adjusted life years gained of community-based care following the acute event will be estimated from a health sector perspective. CONCLUSION: Completion of this study will provide a novel and comprehensive evaluation of the effectiveness and cost-effectiveness of Australian primary care policies. Its success will enable us to highlight the value of data-linkage for this type of research.

Is health-related quality of life between 90 and 180 days following stroke associated with long-term unmet needs?

PURPOSE: Understanding the relationship between health-related quality of life (HRQoL) and long-term unmet needs is important for guiding services to optimise life following stroke. We investigated whether HRQoL between 90 and 180 days following stroke was associated with long-term unmet needs. METHODS: Data from Australian Stroke Clinical Registry (AuSCR) registrants who participated in the Australian Stroke Survivor Needs Survey were used. Outcome data, including the EQ-5D, are routinely collected in AuSCR between 90 and 180 days post-stroke. Unmet needs were assessed at a median of 2 years and categorised into: health; everyday living; work/leisure; and support domains. Multivariable regression was used to determine associations between the EQ-5D dimensions and the likelihood of experiencing unmet needs and the visual analogue scale (VAS) (rating 0-100) and number of reported unmet needs. RESULTS: In total, 173 AuSCR registrants completed the Needs Survey (median age 69 years, 67 % male; 77 % ischaemic stroke). VAS scores were negatively associated with the number of reported long-term unmet needs [irr 0.98, (95 % CI 0.97, 0 99) p < 0.001]. Having EQ-5D activity limitations was associated with unmet living needs (aOR 4.5, 95 % CI 1.1, 18.8). Requiring living supports at 90-180 days was associated with unmet health needs (aOR 4.9, 95 % CI 1.5, 16.1). Those with pain at 90-180 days were less likely to report unmet health (aOR 0.09, 95 % CI 0.02, 0.4) and support needs (aOR 0.2, 95 % CI 0.06, 0.6). CONCLUSION: Routinely collected HRQoL data can identify survivors at risk of experiencing long-term unmet needs. This information is important for targeting service delivery to optimise outcomes following stroke.

Botulinum toxin assessment, intervention and after-care for upper limb hypertonicity in adults: international consensus statement.

Upper limb spasticity affecting elbow, wrist, and finger flexors can be safely and effectively reduced with injections of botulinum toxin type-A (BoNT-A). It has been best studied in adults in the context of post-stroke spasticity. The clinical benefits include reduction in pain and deformity, improvement in washing and dressing the upper limb, and a reduction in caregiver burden (Class I evidence, recommendation level A). Some patients show improvement in function performed by active movement of the affected upper limb (Class III evidence, recommendation C), but predicting and measuring this is difficult, and further research is needed. An individually based approach to treatment and outcome measurement is preferred (Class IV, recommendation U). More research is needed to resolve many unknown issues of assessment and treatment, using research methods appropriate to the question.

A systematic review of upper extremity casting for children and adults with central nervous system motor disorders.

OBJECTIVE: To summarize evidence on the use of upper extremity casting designed to achieve reductions in contracture, tone, pain, function, oedema or spasticity in the elbow, wrist or hand of adults and children with neurological conditions. DATA SOURCES: A search was conducted of the Cochrane Database of Systematic Reviews; the electronic databases MEDLINE, EMBASE, CINAHL, PEDro, OT-Seeker; Google Scholar; reference lists of retrieved trial reports and review articles. REVIEW METHODS: Two independent reviewers determined whether retrieved study abstracts met inclusion criteria: human subjects; >50% of participants children or adults described as having brain injury, cerebral palsy or stroke. Methodological quality of randomized controlled trials was rated using the PEDro scale (1-10 highest). Thirty-one papers were retrieved and 23 studies appraised: three were randomized controlled trials and four were systematic reviews. Over three-quarters of the studies, excluding systematic reviews, were lower level evidence (n = 4 level V; n = 4 level IV; n = 1 level III). Methodological quality of randomized controlled trials was high (PEDro 8, 8 and 9) and there were modest positive short-term outcomes for two trials, although they did not include no-stretch comparison conditions. Safety issues typically included pain or skin breakdown; two adverse events were not cast related. CONCLUSION: While theoretical rationales suggest upper limb casting should be effective there is insufficient high-quality evidence regarding impact or long-term effects to either support or abandon this practice. High variability in casting protocols indicates little consistency or consensus in practice. As maximum or low-load stretch are rationales for cast application, the absence of no-stretch conditions in existing trials is a major weakness in current evidence.

Is hand splinting effective for adults following stroke? A systematic review and methodologic critique of published research.

BACKGROUND: Upper limb hemiplegia after stroke is common and disabling. Hand splints are widely used to prevent contracture and reduce spasticity. OBJECTIVE: To assess the effectiveness of hand splinting on the hemiplegic upper extremity following stroke. SEARCH STRATEGY: A search was conducted of the Cochrane Central Register of Controlled Trials; the electronic databases MEDLINE, EMBASE, CINAHL, PEDro, SCI, SSCI; websites of professional associations; reference lists in trial reports and other relevant articles. SELECTION CRITERIA: Studies of the effect of upper extremity splinting on motor control, functional abilities, contracture, spasticity, or pain in the hand or wrist. DATA COLLECTION AND ANALYSIS: Validity of studies was assessed systematically and a content analysis was conducted of the methodologies used. Methodological quality of randomized trials was rated by two independent assessors using the PEDro scale. RESULTS: Nineteen studies were appraised for content. Of these, most (63%) were reports of case series. Four studies (21%) were randomized controlled trials. Methodological scores of trials ranged from 2 to 8 (maximum possible score 10). One trial of nominally 'medium' quality reported that inflatable arm splinting makes no difference to hand function (mean difference on Fugl-Meyer Assessment -0.12, 95% confidence interval (CI) -9.8 to 9.6). The remaining trials investigated effects of thermoplastic splints; one trial of 'high quality' reported no difference in contracture formation in the wrist and finger flexor muscles after wearing a hand splint which positioned the wrist in the traditional functional position for 12 hours each night for four weeks (mean difference in range of movement after four weeks was 1 degree, 95% CI -3.7 degrees to 6.1 degrees; power >80%). All remaining trials were of poor methodological quality. Limited research and lack of a no-splint control group in all trials to date limit the usefulness of these results. REVIEWER'S CONCLUSION: There is insufficient evidence to either support or refute the effectiveness of hand splinting for adults following stroke.