Measuring what matters to older persons for active living: part I content development for the OPAL measure across four countries.

AIMS: Many older persons do not think of themselves as "patients" but as persons wishing to live as actively as possible for as long as possible. However, most health-related quality of life (HRQL) measures were developed for use with clinical populations. The aim of this project was to fill that gap and to develop, for international use, a measure of what matters to older persons as they age and seek to remain as active as possible, Older Persons for Active Living (OPAL). METHODS: For content development, interviews about active living were conducted with older persons from Canada, USA, UK, and the Netherlands in English, French, Spanish and Dutch, respectively with subsequent thematic analysis and harmonization. RESULTS: Analyses of transcripts from 148 older persons revealed that active living was a "way of being" and not merely doing activities. Saturation was reached and a total of 59 content areas were identified. After grouping similar "ways" together and after conducting a consensus rating of importance, 19 unique and important "ways" remained. In some languages, formulating was challenging for three of the 19, resulting in changes to two English words and dropping two other words, yielding a final list of 17 "ways of being" with harmonized wording in 4 languages. CONCLUSION: This study underscores the significance of listening to older adults and highlights the importance of considering linguistic and cultural nuances in measure development.

Uncovering the gaps: A systematic mixed studies review of quality of life measures in extremity soft tissue sarcoma.

The health-related quality of life of patients with extremity soft tissue sarcoma (STS) is not precisely captured by current patient-reported outcome measures. Although functional impairment is central to their concerns, multiple sources of distress, emotional restoration, coping strategies, and somatic symptoms are crucial in approaching patients with extremity STS.

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.

Global Burden of Disease Study trends for Canada from 1990 to 2016.

BACKGROUND: The Global Burden of Disease Study represents a large and systematic effort to describe the burden of diseases and injuries over the past 3 decades. We aimed to summarize the Canadian data on burden of diseases and injuries. METHODS: We summarized data from the 2016 iteration of the Global Burden of Disease Study to provide current (2016) and historical estimates for all-cause and cause-specific diseases and injuries using mortality, years of life lost, years lived with disability and disability-adjusted life years in Canada. We also compared changes in life expectancy and health-adjusted life expectancy between Canada and 21 countries with a high sociodemographic index. RESULTS: In 2016, leading causes of all-age disability-adjusted life years were neoplasms, cardiovascular diseases, musculoskeletal diseases, and mental and substance use disorders, which together accounted for about 56% of disability-adjusted life years. Between 2006 and 2016, the rate of all-cause age-standardized years of life lost declined by 12%, while the rate of all-cause age-standardized years lived with disability remained relatively stable (+1%), and the rate of all-cause age-standardized disability-adjusted life year declined by 5%. In 2016, Canada aligned with countries that have a similar high sociodemographic index in terms of life expectancy (82 yr) and health-adjusted life expectancy (71 yr). INTERPRETATION: The patterns of mortality and morbidity in Canada reflect an aging population and improving patterns of population health. If current trends continue, Canada will continue to face challenges of increasing population morbidity and disability alongside decreasing premature mortality.

An umbrella review of the literature on the effectiveness of goal setting interventions in improving health outcomes in chronic conditions.

PURPOSE: To identify the contexts in which goal setting has been used in chronic disease management interventions and to estimate the magnitude of its effect on improvement of health outcomes. METHODS: The strength of evidence and extent of potential bias in the published systematic reviews of goal setting interventions in chronic conditions were summarized using AMSTAR2 quality appraisal tool, number of participants, 95% prediction intervals, and between-study heterogeneity. Components of goal setting interventions were also extracted. RESULTS: Nine publications and 35 meta-analysis models were identified, investigating 25 health outcomes. Of the 35 meta-analyses, none found strong evidence and three provided some suggestive evidence on symptom reduction and perceived well-being. There was weak evidence for effects on eight health outcomes (HbA1c, self-efficacy, depression, anxiety, distress, medication adherence, health-related quality of life and physical activity), with the rest classified as non-significant. Half of the meta-analyses had high level of heterogeneity. CONCLUSION: Goal setting by itself affects outcomes of chronic diseases only to a small degree. This is not unexpected finding as changing outcomes in chronic diseases requires a complex and individualized approach. Implementing goal setting in a standardized way in the management of chronic conditions would seem to be a way forward.IMPLICATIONS FOR REHABILITATIONThe link between goal setting and health outcomes seems to be weak.Some levels of positive behavioural change could be of benefits to patients as seen by improved self-efficacy, patients' satisfaction and overall quality of life.Systematic and consistent application of personalized goal-oriented interventions considering patient's readiness to change could better predict improved outcomes.Incorporation of various goal setting components while actively engaging patient and/or their care givers in the process could appraise how goal setting could help with challenges in faced by people living with chronic conditions in different areas.

Real-time auditory feedback for improving gait and walking in people with Parkinson's disease: a pilot and feasibility trial.

BACKGROUND: Technology is poised to bridge the gap between demand for therapies to improve gait in people with Parkinson's and available resources. A wearable sensor, Heel2Toe™, a small device that attaches to the side of the shoe and gives a sound each time the person starts their step with a strong heel strike, has been developed and pre-tested by a team at McGill University. The objective of this study was to estimate feasibility and efficacy potential of the Heel2Toe™ sensor in changing walking capacity and gait pattern in people with Parkinson's. METHODS: A pilot study was carried out involving 27 people with Parkinson's randomized 2:1 to train with the Heel2Toe[TM] sensor and or to train with recommendations from a gait-related workbook. RESULTS: A total of 21 completed the 3-month evaluation, 14 trained with the Heel2Toe[TM] sensor, and 7 trained with the workbook. Thirteen of 14 people in the Heel2Toe group improved over measurement error on the primary outcome, the 6-Minute Walk Test, (mean change 66.4 m) and 0 of the 7 in the Workbook group (mean change - 19.4 m): 4 of 14 in the Heel2Toe group made reliable change and 0 of 7 in the Workbook group. Improvements in walking distance were accompanied by improvements in gait quality. Forty percent of participants in the intervention group were strongly satisfied with their technology experience and an additional 37% were satisfied. CONCLUSIONS: Despite some technological difficulties, feasibility and efficacy potential of the Heel2Toe sensor in improving gait in people with Parkinson's was supported.

Admission and discharge profiles of people with MS accessing in-patient rehabilitation in Canada.

BACKGROUND: Rehabilitation is the mainstay of management for people with disabilities of neurological origin to maximize function and reduce disability. Access to in-patient rehabilitation is usually reserved for people after crises or those who are discharged from acute care such as in stroke or trauma. Access to people with Multiple Sclerosis (MS) differs across countries and unknown for Canada. With the progression of MS, quality of life (QOL) becomes more closely coupled with independence and hence timely access to rehabilitation is important. The objectives of this paper are (i) to characterize the disability profiles of people with MS admitted to in-patient rehabilitation in Canada; and (ii) to estimate the extent to which disability profiles differ from admission to discharge. METHODS: A longitudinal study of a rehabilitation admission-to-discharge cohort of 3500 people with MS was conducting using latent class analysis on the five Functional Independence Measure (FIM) subscales for Self-care, Transfers, Locomotion, Bladder/Bowel, and Cognition. The extent to which age, sex, and calendar time was associated with latent class membership, at both admission and discharge, was estimated using ordinal logistic regression, and proportional odds model was calculated for each age and sex. RESULTS: At admission five classes were identified. The two most prevalent classes included people with total or moderate dependency in all FIM subscales except cognition (n = 1205 and n = 1099). The third most common was dependent in ambulation only (n = 523), followed by dependence in ambulation with varying degree of limitation in self-care and transfers (n = 465, and n = 208). At discharge four classes were identified with the largest class comprising of people dependent in ambulation and to a lesser degree in transfers (n = 1010). The second most prevalent class was no dependency (n = 946), followed by two classes with varying dependency in all subscales but cognition (n = 678 and n = 771). CONCLUSION: Overall 62.3% of admissions transitioned to a more functional class by discharge. By discharge 28% of the population was characterized by no dependencies; however, 23% remained with dependencies in all areas. Those in the most dependent classes showed the greatest probability of transitioning to a better class at discharge highlighting the importance of reserving scarce rehabilitation services to those with more disability.

Barriers to adherence to antiretroviral therapy: identifying priority areas for people with HIV and healthcare professionals.

BACKGROUND: Challenges to antiretroviral therapy adherence are well-known and continue to be a major hurdle in HIV care. The objective of this paper is to identify barriers to antiretroviral therapy (ART) adherence that are relevant to HIV care from the perspective of people living with HIV and healthcare and social service professionals. METHODS: This study used an online survey design to collect information from the two groups. A total of 100 areas that covered six domains and 20 subdomains were administered to people living with HIV and care professionals in Canada and France. The survey asked participants to rate the importance of each area for HIV care on a four-point Likert scale. Any areas rated 3 or 4 were considered important and ranked. A Chi-square test was conducted for the difference between the groups, people living with HIV and professionals, and between women and men. RESULTS: A response rate of 87% (58/66) in Canada and 65% (38/58) was achieved. 15 of 43 (35%) areas were endorsed as important barriers by both groups, across countries and sex-covering subdomains - drug cost coverage, challenging material circumstances, HIV stigma, and privacy concerns, affect, motivation, beliefs, acceptance of HIV, comorbidity, side effects, and demands and organisation of daily life. People living with HIV identified two, and care professionals identified nine, additional areas as important barriers to HIV care across different domains and subdomains. CONCLUSION: The study identified some common and distinct barriers to ART from the perspective of the people living with HIV and care professionals.

Evidence for the Efficacy of Commercially Available Wearable Biofeedback Gait Devices: Consumer-Centered Review.

BACKGROUND: The number of wearable technological devices or sensors that are commercially available for gait training is increasing. These devices can fill a gap by extending therapy outside the clinical setting. This was shown to be important during the COVID-19 pandemic when people could not access one-on-one treatment. These devices vary widely in terms of mechanisms of therapeutic effect, as well as targeted gait parameters, availability, and strength of the evidence supporting the claims. OBJECTIVE: This study aimed to create an inventory of devices targeting improvement in gait pattern and walking behavior and identify the strength of the evidence underlying the claims of effectiveness for devices that are commercially available to the public. METHODS: As there is no systematic or reproducible way to identify gait training technologies available to the public, we used a pragmatic, iterative approach using both the gray and published literature. Four approaches were used: simple words, including some suggested by laypersons; devices endorsed by condition-specific organizations or charities; impairment-specific search terms; and systematic reviews. A findable list of technological devices targeting walking was extracted separately by 3 authors. For each device identified, the evidence for efficacy was extracted from material displayed on the websites, and full-text articles were obtained from the scientific databases PubMed, Ovid MEDLINE, Scopus, or Google Scholar. Additional information on the target population, mechanism of feedback, evidence for efficacy or effectiveness, and commercial availability was obtained from the published material or websites. A level of evidence was assigned to each study involving the device using the Oxford Centre for Evidence-Based Medicine classification. We also proposed reporting guidelines for the clinical appraisal of devices targeting movement and mobility. RESULTS: The search strategy for this consumer-centered review yielded 17 biofeedback devices that claim to target gait quality improvement through various sensory feedback mechanisms. Of these 17 devices, 11 (65%) are commercially available, and 6 (35%) are at various stages of research and development. Of the 11 commercially available devices, 4 (36%) had findable evidence for efficacy potential supporting the claims. Most of these devices were targeted to people living with Parkinson disease. The reporting of key information about the devices was inconsistent; in addition, there was no summary of research findings in layperson's language. CONCLUSIONS: The amount of information that is currently available to the general public to help them make an informed choice is insufficient, and, at times, the information presented is misleading. The evidence supporting the effectiveness does not cover all aspects of technology uptake. Commercially available technologies help to provide continuity of therapy outside the clinical setting, but there is a need to demonstrate effectiveness to support claims made by the technologies.

Identifying misconceptions and knowledge gaps in functional neurological disorders among emergency care providers.

BACKGROUND: Functional Neurologic Disorders (FND) are a common but heterogeneous group of disabling conditions. The Emergency Department (ED) is an important venue for care and referral as it is often the first point of contact when patients with FND are faced with a crisis or exacerbation of symptoms. METHODS: ED providers (n = 273) practicing in the Cleveland Clinic Foundation Northeast Ohio network were invited to participate through secure web application electronic surveys. Data were collected on practice profiles, knowledge, attitudes, management of FND, and awareness of available resources for FND. RESULTS: Sixty providers completed the survey (22% response rate; n = 50 ED physicians, 10 advanced care providers) with 95.0% (n = 57) reporting a lack of understanding about FND. The terms Psychogenic Nonepileptic Seizures and stress induced/stress related disease were used by 60.0% (n = 36) and 58.3% (n = 35) respectively. Ninety percent (n = 53) rated their experience with managing FND patients as at least more difficult. Eighty- five percent (n = 51) agreed with "rule out others" and 60% (n = 36) agreed with "caused by psych stress". Eighty six percent (n = 50) believe that there is a difference between FND from malingering. Only one respondent was familiar with any FND resources and 79% (n = 47) reported the need for FND specific educational materials. CONCLUSION: This survey revealed major gaps in knowledge, inaccurate perceptions, and management that differs from the current standard of care among ED providers caring for patients with FND. Educational opportunities are needed to guide diagnosis and evidence-based treatment to optimize management of patients with FND.

What Do Older Canadians Think They Need to Walk Well?

Purpose: To identify older Canadians' perception of the importance of expert-generated elements of walking quality, and the contributors to and consequences of perceived walking quality. Method: Cross-sectional survey of 649 adults was conducted through a commercial participant panel, Hosted in Canada Surveys. Results: Of the 649 respondents, 75% were between 65 and 74 years old (25% ≥ 75) and 49% were women. The most important elements were foot, ankle, hip, and knee mobility with little difference in ranks across walking perception (Fr χ12 = 5.0, p > 0.05). People who were older by a decade were more likely to report poorer walking (POR: 1.4; 95% CI: 1.0, 1.7), as were women compared to men, and people who used a walking aid compared to none. Lung disease showed the highest association with a perception of not walking well (POR: 7.2; 95% CI: 3.7, 14.2). The odds of being willing to pay more for a technology to improve walking were always greater for those with a lower perception of their walking quality. Conclusions: People who perceived their walking quality as poor were more likely to report poorer health and were willing to pay more for a technology to improve walking. This supports the opportunity of leveraging wearable technologies to improve walking.

Objectif : déterminer la perception des Canadiens âgés à l'égard de l'importance des éléments relatifs à la qualité de la marche produits par des experts et établir les incitatifs à la perception de la qualité de la marche, de même que les conséquences s'y rapportant. Méthodologie : sondage transversal auprès de 649 adultes au moyen de Hosted in Canada Surveys, un groupe commercial de participants. Résultats : sur les 649 répondants, 75 % étaient âgés de 65 à 74 ans (25 % ≥ 75 ans), et 49 % étaient des femmes. La mobilité du pied, de la cheville, de la hanche et du genou constituait les éléments les plus importants, et le niveau hiérarchique de chacun différait peu en matière de perceptions de la marche (test de Friedman [Fr] χ2 = 5,0, degré de liberté [ddl] 12, p > 0,05). Les personnes âgées d'une décennie de plus risquaient davantage de déclarer moins bien marcher (rapport de cotes proportionnel [RCP] : 1,4; IC à 95 % : 1,0 à 1,7), tout comme les femmes et les personnes qui utilisaient une aide à la marche. La maladie pulmonaire était la plus liée à la perception de moins bien marcher (RCP : 7,2; IC à 95 % : 3,7, 14,2). La probabilité d'être prêt à payer plus cher pour disposer d'une technologie destinée à améliorer la marche était toujours plus forte chez les personnes qui avaient une moins bonne perception de leur qualité de marche. Conclusion : les personnes qui avaient une moins bonne perception de leur qualité de marche étaient plus susceptibles de se déclarer en moins bonne santé et étaient prêtes à payer plus cher pour disposer d'une technologie destinée à améliorer la marche. Cette constatation confirme la possibilité de mettre à profit des technologies portables pour améliorer la marche.

Development of a Prototype for a Bilingual Patient-Reported Outcome Measure of the Important Health Aspects of Quality of Life in People Living with HIV: The Preference Based HIV Index (PB-HIV).

(1) Background: The aim of this project was to develop a short, HIV-specific, health-related quality of life measure with a scoring system based on patient preferences for the different dimensions of the Preference-Based HIV Index (PB-HIV). (2) Methods: This study is a cross-sectional analysis of data from the Canadian Positive Brain Health Now cohort (n = 854; mean age 53 years). Items from the standardized measures were mapped to the areas from the Patient-Generated Index and formed the domains. A Rasch analysis was used to identify the best performing item to represent each dimension. Each item was then regressed on self-rated health (scored 0 to 100) and the regression parameters were used as scaling weights to form an index score for the prototype measure. (3) Results: Seven independent dimensions with three declarative statements ordered as response options formed the PB-HIV Index (pain, fatigue, memory/concentration, sleep, physical appearance/body image, depression, motivation). Regression parameters from a multivariable model yielded a measure with a scoring range from 0 (worst health) to 100 (perfect health). (4) Conclusions: Preference-based measures are optimal, as the total score reflects gains in some dimensions balanced against losses in others. The PB-HIV Index is the first HIV-specific preference-based measure.

Content validation of a new measure of patient-reported barriers to antiretroviral therapy adherence, the I-Score: results from a Delphi study.

BACKGROUND: Over a third of people living with HIV (PLHIV) have suboptimal adherence to antiretroviral therapy (ART). Measures of barriers to ART adherence often lack comprehensiveness. To help manage ART adherence barriers in HIV care, we are developing a new patient-reported outcome measure (PROM) of these barriers (the I-Score). METHODS: We assessed the content validity of 100 items (distinct barriers) to retain only those most relevant to both PLHIV and HIV health/social service providers. A web-based Delphi was conducted in Canada and France, collecting data from December 2018 to October 2019. Items were evaluated on relevance (the combined rated importance and actionability for HIV care of items among both PLHIV and providers); comprehensibility (rated item clarity); comprehensiveness (examined against our conceptual framework); cross-cultural equivalence (based on comparisons by questionnaire language (English, French) and country of residence). Pearson's chi-square tests were used for comparisons by language, country, gender, and stakeholder group (PLHIV, providers). RESULTS: Panelists included 40 PLHIV and 57 providers (66% response rate). Thirty-one items were retained based on consensus thresholds for relevance (minimum: 50% for PLHIV, 60% for providers) and showed good comprehensibility and comprehensiveness, when compared to our conceptual framework (representation of: 6/6 domains, 15/20 subdomains). No significant difference in relevance based on language or country was found among retained items, suggestive of cross-cultural equivalence. Among all 100 items, only 6 significant differences on relevance were observed for gender. For 62 items, the relevance ratings of PLHIV and providers differed significantly, with providers showing greater endorsement of all items but one. DISCUSSION: The Delphi led to a much-needed item reduction. Remaining items highlight the panel's multidimensional priorities for the PROM on ART adherence barriers, with few, if any, differences by language, country, and gender. While the analyses may lack generalizability and power, the sample size is considered adequate for a PROM validation study. CONCLUSION: Retained items showed good content validity. The different patterns of item endorsement observed underscore the utility of engaging multiple stakeholder groups in PROM development for use in clinical practice. The greater endorsement of items by providers versus patients merits further investigation, including the implications of such differentials for measure development.

Utility of mobile technology in medical interpretation: A literature review of current practices.

OBJECTIVES: Language barriers limit healthcare access. However, professional interpretation usage is infrequent due to high cost and poor interpreter availability. Healthcare-oriented mobile applications are becoming more accepted and may help alleviate this burden. This literature review aims to better understand the utility of mobile technology in healthcare interpretation. Specifically, the objective of this review is to synthesize the feasibility, outcome, and challenges of implementing technological medical interpretation services. PATIENT INVOLVEMENT: No patients were involved for this review. METHODS: In December 2019, MEDLINE (Ovid) was systematically searched according to PRISMA guidelines. All articles discussing the utility of technology in healthcare interpretation encounters were included. RESULTS: Two major themes emerged: 1) comparing video and phone interpretation with in-person interpretation and 2) assessing direct translation software in healthcare settings. Phone and video interpretation help reduce overall patient wait-times. Both patients and clinicians preferred in-person or video interpretation over interpretation by phone. Chief benefits of using direct translation software include immediate access, low costs, and sustainability. Several studies discussed potential translation inaccuracies and the importance of having professional interpreters in medico-legal discussions. CONCLUSION: Mobile applications may be used to facilitate access to medical interpreters with high clinician and patient satisfaction. Direct in-app translations facilitate access but risk inaccuracies with important medico-legal considerations. PRACTICAL VALUE: Mobile applications are available at low costs and can improve access to interpreters though video and phone calls. Mobile software can also provide direct translation and facilitate clinical care. Clinicians should prioritize face-to-face encounters with professional medical interpreters, whenever possible. In a time of social distancing amidst the current COVID-19 pandemic, there is crucial value in elucidating the best telehealth interpretation practices.

Barriers to Use of Remote Monitoring Technologies Used to Support Patients With COVID-19: Rapid Review.

BACKGROUND: The COVID-19 pandemic has acted as a catalyst for the development and adoption of a broad range of remote monitoring technologies (RMTs) in health care delivery. It is important to demonstrate how these technologies were implemented during the early stages of this pandemic to identify their application and barriers to adoption, particularly among vulnerable populations. OBJECTIVE: The purpose of this knowledge synthesis was to present the range of RMTs used in delivering care to patients with COVID-19 and to identify perceived benefits of and barriers to their use. The review placed a special emphasis on health equity considerations. METHODS: A rapid review of published research was conducted using Embase, MEDLINE, and QxMD for records published from the inception of COVID-19 (December 2019) to July 6, 2020. Synthesis involved content analysis of reported benefits of and barriers to the use of RMTs when delivering health care to patients with COVID-19, in addition to health equity considerations. RESULTS: Of 491 records identified, 48 publications that described 35 distinct RMTs were included in this review. RMTs included use of existing technologies (eg, videoconferencing) and development of new ones that have COVID-19-specific applications. Content analysis of perceived benefits generated 34 distinct codes describing advantages of RMTs, mapped to 10 themes overall. Further, 52 distinct codes describing barriers to use of RMTs were mapped to 18 themes. Prominent themes associated with perceived benefits included a lower burden of care (eg, for hospitals, health care practitioners; 28 records), reduced infection risk (n=33), and support for vulnerable populations (n=14). Prominent themes reflecting barriers to use of RMTs included equity-related barriers (eg, affordability of technology for users, poor internet connectivity, poor health literacy; n=16), the need for quality "best practice" guidelines for use of RMTs in clinical care (n=12), and the need for additional resources to develop and support new technologies (n=11). Overall, 23 of 48 records commented on equity characteristics that stratify health opportunities and outcomes, including general characteristics that vary over time (eg, age, comorbidities; n=17), place of residence (n=11), and socioeconomic status (n=7). CONCLUSIONS: Results of this rapid review highlight the breadth of RMTs being used to monitor and inform treatment of COVID-19, the potential benefits of using these technologies, and existing barriers to their use. Results can be used to prioritize further efforts in the implementation of RMTs (eg, developing "best practice" guidelines for use of RMTs and generating strategies to improve equitable access for marginalized populations).

Barriers and Facilitators Affecting the HIV Care Cascade for Migrant People Living with HIV in Organization for Economic Co-Operation and Development Countries: A Systematic Mixed Studies Review.

Migrants in countries affiliated with the Organization for Economic Co-operation and Development (OECD) have a higher risk of acquiring HIV, experience delayed HIV diagnosis, and have variable levels of engagement with HIV care and treatment when compared to native-born populations. A systematic mixed studies review was conducted to generate a multilevel understanding of the barriers and facilitators affecting HIV Care Cascade steps for migrant people living with HIV (MLWH) in OECD countries. Medline, Embase, Scopus, CINAHL, and the Cochrane Library were searched on March 25, 2020. Screening, critical appraisal, and analysis were conducted independently by two authors. We used qualitative content analysis and the five-level Socio-Ecological Model (i.e., individual, interpersonal, organizational, community, and policy) to categorize barriers and facilitators. Fifty-nine studies from 17 OECD countries were included. MLWH faced similar barriers and facilitators regardless of their host country, ethnic and geographic origins, or legal status. Most barriers and facilitators were associated with the individual and organizational levels and centered around retention in HIV care and treatment. Adapting clinical environments to better address MLWH's competing needs via multidisciplinary models would address retention issues across OECD countries.

Clinically Assessed Walking Capacity Versus Real-World Walking Performance in People with Multiple Sclerosis.

BACKGROUND: Ecological validity is an important psychometric property when assessing function. How a person with multiple sclerosis (MS) performs in clinical settings and in natural environments can be quite different. Walking is the most frequently assessed and recommended way to maintain health in a progressive disease such as MS. The objective was to estimate the extent to which clinical tests of walking capacity differ from real-world walking performance in people with MS. METHODS: Ninety-eight women and 27 men with MS were assessed using the 6-Minute Walk Test (6MWT) and wore an accelerometer for 7 consecutive days. Mean number of steps, mean number of steps at a brisk cadence or faster, and cumulative time per week spent walking at a brisk cadence or faster were regressed on 6MWT categories using quantile (median) regression. Contiguous steps were grouped into bouts of less than 5 minutes and 5 minutes or longer, and number of bouts 5 minutes or longer was regressed on 6MWT categories using a zero-inflated Poisson model. RESULTS: A total of 869 patient-days of accelerometer data were available. Mean total number of steps per day was greater for people with higher walking capacity (6MWT distance, ≥600 m). However, this group spent a small proportion of time walking at higher cadence bands. Compared with people with 6MWT distance of at least 600 m, people walking less than 500 m had approximately half the rate of walking bouts of 5 minutes or longer. Positive mood and fewer exercise barriers predicted more walking bouts of at least 5 minutes. CONCLUSIONS: Study participants with MS spent a small proportion of time walking at a health-promoting intensity.

Functioning Profiles of Young People with MS in Inpatient Rehabilitation: Data from the National Rehabilitation Reporting System in Canada.

BACKGROUND: Recent evidence has suggested an existence of a MS prodome, indicating that symptoms of neurodegeneration were present before the first clinical event. These early signs of MS are usually not recognized as a symptom of MS and some young adults with MS are very likely to have had these symptoms in their childhood or adolescence. It is thus of interest to examine the differences in disability profiles of young people with MS. This study focused on young people with MS with severe enough disability as to need rehabilitation services. The most likely reason for this need is poor recovery from a relapse. OBJECTIVES: The purpose of the study is to characterize and compare the functional profiles (as reflected by Functional Independence Measure scores) of people with MS admitted to in-patient rehabilitation in Canada across two age groups (younger than 25 and 26 to 35 years old) with specific aims to estimate the extent to which these profiles change over time; and to identify the proportions of people who made a reliable change. METHODS: Data from the National Rehabilitation Reporting System (NRS) in Canada was analyzed. The dataset contained information of 457 people with MS aged 16 to 35 who were admitted to inpatient rehabilitation. Scores on the Functional Independence Measure at admission and discharge were analyzed using latent class analysis. Change in FIM was estimated using reliable change index. Probability of making a reliable change across the different classes, age and sex was estimated using logistic regression. RESULTS: There were four functional classes at admission and three classes at discharge. The four functional classes at admission were: A). Minimal assistance/Supervision in walking, B). Assistance in Activities of Daily Living (ADL)/Mobility, C). Assistance/dependent in ADL/Mobility, and D). Dependent in ADL and mobility. At admission, 19.7% of patients belonged to the best class, but at discharge, 66.8% of people belonged to the best class, indicating that 45% of the patients improved. Across the two age groups, disability profiles differed at admission and discharge. People who are 25 years and younger were more likely to belong to the lower functioning profiles classes (Class C and D) compared to the older group who were more likely to belong to Class B and C, indicating that younger people were more impaired at admission. The probability of making reliable change was also different between the latent classes. People in the lowest two classes at admission, were more likely to make reliable change (OR=10.9, OR=7.2). CONCLUSIONS: The results of this study suggest that younger people were admitted with a more severe disability profile when compared to a slightly older group but were more likely to make improvements during rehabilitation. The functional profiles in MS differed across sex and age, signaling a need to tailor rehabilitation interventions across the functional profiles, age and sex. Accessing existing sources of data is a useful method for filling in gaps about outcomes for populations with rare diseases.

Validation of an Individualized Measure of Quality of Life, Patient Generated Index, for Use with People with Parkinson's Disease.

METHODS: Patients with PD completed the PGI and various standard patient-reported outcome (PRO) measures. The PGI and standard PRO measures were compared at the total score, domain, and item levels. Pearson's correlations and independent t-tests were used, as well as positive and negative predictive values. RESULTS: The sample (n = 76) had a mean age of 69 (standard deviation 9) and were predominantly men (59%). The PGI was moderately correlated (r = -0.35) with the standardized disease-specific QOL measure Parkinson's Disease Questionnaire (PDQ-8). Within one severity rating, agreement between the PGI and different standard outcome measures ranged from 85 to 100% for walking, 69 to 100% for fatigue, 38 to 75% for depression, and 20 to 80% for memory/concentration. CONCLUSION: This study demonstrates that nominated areas of QOL on the PGI provide comparable results to standard PRO measures, and provides evidence in support of the validity of this individualized measure in PD.

A new approach toward gait training in patients with Parkinson's Disease.

BACKGROUND: Typically, people with Parkinson's Disease (PD) progress to develop a gait pattern that is characterized by quick, short and shuffling steps. Gait cycle is altered and lacks definition and fluidity. Gait training combined with a variety of feedback modalities for PD are usually based on non-immediate and externally-based cues but none of these provide real-time feedback on gait quality and acquired gains tend to abate shortly after rehabilitation. Based on principals of motor learning, our team has developed the Heel2Toe sensor to provide real-time auditory feedback during gait training. RESEARCH QUESTION: Is a short-term training using the Heel2Toe sensor feasible and efficient to improve gait in people with PD? Our objectives are to identify the extent of the immediate response to the feedback within the same session and the carry-over response to training and; 2) to identify patients' perceived effects, pleasures and challenges of using the Heel2Toe. METHODS: Single-arm, proof-of-concept study. Six people received five sessions of gait training over a 2-3-week period using the Heel2Toe augmented with mobility exercises as an adjunct to gait training. The main outcomes were technically assessed gait parameters collected over a 2-minute walk test, without and with feedback. Heel2Toe signals were analyzed to extract angular velocity(AV), percentage of good steps, average cadence, and AV coefficient of variation(CV). RESULTS: An immediate response to the Heel2Toe use and a carry-over response to the short-term training with the sensor were observed: an increase in AV with a reduction in CV (better heel strike and gait regularity); an increase in %good steps; and a near-optimal and homogeneous cadence (∼100 steps/min), which is equivalent to a moderate-intensity walking. SIGNIFICANCE: Gait training using the Heel2Toe sensor is feasible and potentially effective for improving gait quality in people with PD. A definitive trial is a logical next step.