Exploring the Poststroke Experiences and Needs of South Asian Communities Living in High-Income Countries: Findings from a Scoping Review.

Despite the high prevalence of stroke among South Asian communities in high-income countries, a comprehensive understanding of their unique experiences and needs after stroke is lacking. This study aimed to synthesize the literature examining the experiences and needs of South Asian community members impacted by stroke and their family caregivers residing in high-income countries. A scoping review methodology was utilized. Data for this review were identified from seven databases and hand-searching reference lists of included studies. Study characteristics, purpose, methods, participant characteristics, results, limitations, recommendations, and conclusions were extracted. Data were analyzed using descriptive qualitative analysis. In addition, a consultative focus group exercise with six South Asian community members who had experienced a stroke and a program facilitator was conducted to inform the review interpretations. A total of 26 articles met the inclusion criteria and were analyzed. Qualitative analysis identified four descriptive categories: (1) rationale for studying the South Asian stroke population (e.g., increasing South Asian population and stroke prevalence), (2) stroke-related experiences (e.g., managing community support versus stigma and caregiving expectations), (3) stroke service challenges (e.g., language barriers), and (4) stroke service recommendations to address stroke service needs (e.g., continuity of care). Several cultural factors impacted participant experiences, including cultural beliefs about illness and caregiving. Focus group participants from our consultation activity agreed with our review findings. The clinical and research recommendations identified in this review support the need for culturally appropriate services for South Asian communities across the stroke care continuum; however, more research is necessary to inform the design and structure of culturally appropriate stroke service delivery models.

Development of a self-report measure of cognitive change: assessment of interpretability in two samples, people with HIV and people without HIV.

AIM: The overall aim of this study was to develop a method of measuring change in cognitive ability from the person's perspective. METHODS: Cognitive change items came from an item pool that was used to develop the Communicating Cognitive Concerns Questionnaire (C3Q). The change items were administered to a test sample of 211 people with HIV + and a sample of 484 people drawn from the general population (HIV- sample). Rasch analysis was used to identify items that formed a linear continuum and correlations with measures of related constructs were used to support the interpretability of the new measure. RESULTS: Eleven of the original 12 change items fit the unidimensional Rasch model in both samples with a near similar ordering of the items. The average value for cognitive change of the HIV + sample was greater than that of the HIV- sample. Values on C3Q-Change correlated most highly (> 0.7) with current self-reported cognitive status and measures of depression and anxiety (> 0.6). The lowest correlation was with performance-based cognitive ability (r = 0.2). CONCLUSION: The items of C3Q-Change fit a strong measurement model and related to converging constructs in an expected way. Further work needs to be done to assess the meaning of self-reported cognitive change in relationship to measured change and to examine sources of differential item functioning.

How Much Does Presenteeism Change in Response to Interventions or Alterations in Health Status? A Systematic Review and Meta-Analysis Using the COSMIN Methodology.

Purpose The purpose of this study was to estimate the extent to which measures of presenteeism among workers change in response to alterations in health status induced by treatment or natural history. Methods We searched eight databases in August 2020 for studies published since 2012 measuring presenteeism longitudinally. Two independent reviewers screened the titles, abstracts, and full-text articles and performed data extraction. Studies were stratified into longitudinal studies using presenteeism as an outcome and measurement studies designed to test the responsiveness of presenteeism measures. We appraised the methodological quality of the measurement studies using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) risk of bias checklist. Standardized response means (SRMs) for interventional studies where participants reported improvement on anchor measures were quantitatively pooled.Results Our searches returned 2882 results. Eleven measurement studies and 126 longitudinal studies were included. Of the measurement studies (n = 2625 participants), 7 had adequate study quality and 4 studies were deemed doubtful. Anchors and responsiveness methods varied considerably. Our estimate of responsiveness from 5 measurement studies and 4 presenteeism measures is an SRM of 0.85 (95% CI 0.77, 0.92) and Cohen's d of 0.54 (95% CI 0.49, 0.58), translating to an average important change of 17/100. For deterioration, the value is - 17/100. Conclusions We found considerable variation regarding how responsiveness data was reported in measurement studies. There is evidence that responsiveness is strong for four presenteeism measures: the Work Productivity Survey, the Work Functioning Impairment Scale, the Work Role Functioning Questionnaire, and the Nurses Work Functioning Questionnaire.

Exploring the poststroke experiences and unmet needs of South Asian communities in high-income countries: a scoping review protocol.

INTRODUCTION: South Asian groups experience a higher burden of stroke and poorer functional outcomes after stroke than their White counterparts. However, within the stroke literature, there has been little focus on the unique poststroke needs of the South Asian community and opportunities for community-based services to address these needs. RESEARCH QUESTION: What is the current knowledge base related to the experiences and needs, including unmet needs of people living with stroke and their caregivers from South Asian communities living in high-income countries? AIMS: This is a protocol for a review that intends to synthesise existing studies of the poststroke experiences and needs of individuals from South Asian communities to uncover opportunities for community-based resources to address these needs. METHODS AND ANALYSIS: This scoping review methodology will be guided by modified Arksey and O'Malley (2005) and Joanna Briggs Institute frameworks. A search on OVID Medline, OVID Embase, OVID PsycINFO, EBSCO CINAHL, the Cochrane Library, Scopus and Global Index Medicus will be conducted to synthesise existing peer-reviewed literature (all study designs). Grey literature will be searched through detailed hand searching. Literature focusing on the poststroke experiences and needs of South Asian groups impacted by stroke residing in high-income countries will be included. Study descriptors will be extracted (eg, study location, type, methodology). Data will be analysed descriptively and thematically. Team meetings will provide opportunities for peer debriefing, thereby enhancing analytic rigour. CONCLUSION AND IMPLICATIONS: Findings will enhance knowledge of the poststroke experiences and needs of South Asian communities living in high-income countries and identify actionable opportunities for community-based resources to address needs. ETHICS AND DISSEMINATION: Ethics approval was not required for this scoping review protocol. Community-based organisations will be consulted to provide insights into the analysis and assist with dissemination. Dissemination of findings will also occur through a publication and academic presentations.

Reducing research wastage by starting off on the right foot: optimally framing the research question.

PURPOSE: Strongly framed research questions are clear as to the population (P), the exposures or interventions (E/I), comparison groups (C), outcomes (O), time when relevant (T), and what the investigator wants to know. A solid framework sets up the measurement model, analysis, and anticipated results. The purpose of this study was to estimate the extent to which research questions in journals that focused on patient-reported outcome measures (PROM) and quality of life (QOL) are clear. METHODS: All 440 research articles published in four PROM journals in 2020. excluding reviews, psychometric, and qualitative papers, were reviewed. Research questions were classified as: (i) adequately framed (ii) poorly framed; or (iii) unframed based on clarity criteria. Examples from each journal were presented and reframed to match results in the article. RESULTS: Of 440 articles, 195 (44.3%) were classified as adequately framed; 230 (52.2%) as poorly framed; and 15 (3.4%) as unframed. There was heterogeneity across journals (Chi-square: 20.8; 6 df; p = 0.002). Only 29% were framed according to what the investigators wanted to know; 72% were framed like a "to do" list; and 6% were framed as a research agenda. CONCLUSION: Almost half of the questions were poorly framed or unframed a practice that could contribute to research wastage. Even "adequately framed" questions rarely stated what they wanted to know a priori, increasing the risk of biased reporting. Researchers, reviewers, and editors should encourage the use established frameworks for research questions.

Development and Validation of a Cognitive Reserve Index in HIV.

OBJECTIVES: In the neuroHIV literature, cognitive reserve has most often been operationalized using education, occupation, and IQ. The effects of other cognitively stimulating activities that might be more amenable to interventions have been little studied. The purpose of this study was to develop an index of cognitive reserve in people with HIV, combining multiple indicators of cognitively stimulating lifetime experiences into a single value. METHODS: The data set was obtained from a Canadian longitudinal study (N = 856). Potential indicators of cognitive reserve captured at the study entry included education, occupation, engagement in six cognitively stimulating activities, number of languages spoken, and social resources. Cognitive performance was measured using a computerized test battery. A cognitive reserve index was formulated using logistic regression weights. For the evidence on concurrent and predictive validity of the index, the measures of cognition and self-reported everyday functioning were each regressed on the index scores at study entry and at the last follow-up [mean duration: 25.9 months (SD 7.2)], respectively. Corresponding regression coefficients and 95% confidence intervals (CIs) were computed. RESULTS: Professional sports [odds ratio (OR): 2.9; 95% CI 0.59-14.7], visual and performance arts (any level of engagement), professional/amateur music, complex video gaming and competitive games, and travel outside North America were associated with higher cognitive functioning. The effects of cognitive reserve on the outcomes at the last follow-up visit were closely similar to those at study entry. CONCLUSION: This work contributes evidence toward the relative benefit of engaging in specific cognitively stimulating life experiences in HIV.

Feasibility and potential benefits of a structured exercise program on cognitive performance in HIV.

Although exercise has been shown to improve cardiorespiratory and metabolic outcomes in people with HIV, its effect on cognitive ability remains understudied. Our study aimed to estimate the feasibility and efficacy potential of a 12-week aerobic and resistance training program on cognitive and physical performance outcomes. This is an externally controlled, two time-point, feasibility study within a larger study using a cohort multiple randomized controlled design yielding 3 groups: intervention group; comparison group and refusers. The intervention consisted of high-intensity interval training and resistance exercises 3 days/week. Specific feasibility and brain health outcomes were evaluated. Cognitive ability was ascertained by the Brief Cognitive Ability Measure (B-CAM) in all three groups. Standardized tests of physical performance were performed in the intervention group. Effect size, 95% confidence intervals, responder status analyses and reliable change indices were computed. Adherence to the intervention schedule and acceptability outcomes were good. There was no reliable change on B-CAM in the exercise group. Most physical performance measures benefited from the exercise training (effect sizes: 0.2 - 1.5). Although the 12-week exercise program improved physical capacity, it did not yield gains in cognitive ability in HIV. Further research is required to determine the exercise parameters that could benefit cognition.

Association between cognitive reserve and cognitive performance in people with HIV: a systematic review and meta-analysis.

Cognitive reserve is a potential explanation for the disparity between brain pathology and its clinical manifestations. The main objective of this study was to estimate, based on published studies, the strength of the association between cognitive reserve and cognitive performance in individuals with HIV. A systematic literature search using Ovid MEDLINE, PsychINFO, and EMBASE was performed to identify studies published between 1990 and 2016 that quantified the association between cognitive reserve and cognitive performance in HIV. A random-effects meta-analysis was used to compute a summary estimate (Cohen's d) with 95% confidence intervals (CI) and 95% prediction intervals (PI). The risk of bias and quality of reporting in the studies were indicated by the Appraisal tool for Cross-Sectional Studies (AXIS). Ten observational studies were deemed eligible. The pooled effect size was 0.9 (95% CI: 0.7-1.0; 95% PI: 0.4-1.4) with marked heterogeneity studies [Cochran's Q (df = 9) = 28.0, p = .0009; I2 statistic = 67.4%]. Risk-of-bias appraisal showed that non-response bias was never addressed and the items associated with selection bias were only partially met. The association between cognitive reserve and cognitive performance suggests that building reserve through non-pharmacological interventions could be a potentially effective way of combating cognitive impairment in people with HIV.

Where have all the pilot studies gone? A follow-up on 30 years of pilot studies in Clinical Rehabilitation.

INTRODUCTION: Pilot studies are meritorious for determining the feasibility of a definitive clinical trial in terms of conduct and potential for efficacy, but their possible applications for planning a future trial are not always fully realized. The purpose of this review was to estimate the extent to which pilot/feasibility studies: (i) addressed needed objectives; (ii) led to definitive trials; and (iii) whether the subsequent undertaking of a definitive trial was influenced by the strength of the evidence of outcome improvement. METHODS: Trials published in the journal Clinical Rehabilitation, since its inception, were eligible if the word 'pilot' or 'feasibility' was specified somewhere in the article. A total of 191 studies were reviewed, results were summarized descriptively, and between-group effect sizes were computed. RESULTS: The specific purposes of piloting were stated in only 58% ( n = 110) of the studies. The most frequent purpose was to estimate the potential for efficacy (85%), followed by testing the feasibility of the intervention (60%). Only 12% of the studies were followed by a definitive trial; <4% of studies had a main study underway or a published study protocol. There was no relationship between observed effect size and follow-up of pilot studies, although the confidence intervals were very wide owing to small number of trials that followed on. DISCUSSION: Labelling and reporting of pilot studies needs to be improved to be concordant with the recently issued CONSORT guidelines. Feasibility needs to be fully tested and demonstrated prior to committing considerable human and monetary resources.

How have research questions and methods used in clinical trials published in Clinical Rehabilitation changed over the last 30 years?

Research in rehabilitation has grown from a rare phenomenon to a mature science and clinical trials are now common. The purpose of this study is to estimate the extent to which questions posed and methods applied in clinical trials published in Clinical Rehabilitation have evolved over three decades with respect to accepted standards of scientific rigour. Studies were identified by journal, database, and hand searching for the years 1986 to 2016.A total of 390 articles whose titles suggested a clinical trial of an intervention, with or without randomization to form groups, were reviewed. Questions often still focused on methods to be used (57%) rather than what knowledge was to be gained. Less than half (43%) of the studies delineated between primary and secondary outcomes; multiple outcomes were common; and sample sizes were relatively small (mean 83, range 5 to 3312). Blinding of assessors was common (72%); blinding of study subjects was rare (19%). In less than one-third of studies was intention-to-treat analysis done correctly; power was reported in 43%. There is evidence of publication bias as 83% of studies reported either a between-group or a within-group effect. Over time, there was an increase in the use of parameter estimation rather than hypothesis testing and there was evidence that methodological rigour improved.Rehabilitation trialists are answering important questions about their interventions. Outcomes need to be more patient-centred and a measurement framework needs to be explicit. More advanced statistical methods are needed as interventions are complex. Suggestions for moving forward over the next decades are given.

Critical appraisal of questionnaires to assess functional impairment in individuals with mild cognitive impairment.

BACKGROUND: Mild deficits in instrumental activities of daily living (IADLs) have consistently been reported in the individuals with mild cognitive impairment (MCI). A variety of functional assessment tools, including self-and informant report questionnaires and performance-based measures, have been employed in MCI. Previously, a limited focus has been directed at appraising the quality of questionnaires. The goal of this study was to identify the questionnaires that have been validated in the MCI population. Additionally, the quality of validation studies and psychometric attributes of these questionnaires were appraised. METHODS: Relevant articles were systematically searched in PsychINFO, Ovid MEDLINE, and CINAHL against specific eligibility criteria. To evaluate the methodology of the psychometric studies, the COSMIN checklist was employed. Also, the psychometric properties of the assessment tools were evaluated based upon Terwee's criteria. RESULTS: A total of five psychometric studies and questionnaires were critically evaluated. Varying psychometric properties were available for the chosen tools. None of the studies received the best possible rating for their methodological quality. It was found that questionnaires with high discriminative ability to distinguish MCI from other diagnostic groups were: Disability Assessment in Dementia-6 (DAD-6), Functional Activity Questionnaire (FAQ), and Alzheimer's Disease Cooperative Study/Activities of Daily Living scale adapted for MCI patients (ADCS-MCI-ADL-24). CONCLUSION: Psychometric studies with strong methodological rigor are required in the future. Considering the fact that IADL decline has been associated with dementia, early detection of functional difficulties in MCI needs to be encouraged as it will allow suitable and timely interventions to prolong functional independence of affected individuals.