Measuring what matters to older persons for active living: part II cross-sectional validity evidence for OPAL measure across four countries.

INTRODUCTION: Through interviews with 148 older persons from four countries and in four languages, the content for a 17-item measure of active living was developed. The purpose of this paper is to present further evidence of the extent to which this new measure, Older Persons Active Living (OPAL), is "fit-for-purpose" for measuring the extent of active living at one point in time. METHODS: A cross-sectional study was carried out on a population aged 65 + and living independently, drawn from a participant panel, HostedinCanada, sampling people from Canada, United States, United Kingdom, and Netherlands. The survey instrument comprised the OPAL questionnaire rated on importance and frequency, sociodemographics, and information on physical and mental function. The argument-based approach to validity framed the analyses. Logistic regression, structural equation modeling, ordinary least-squares regression, and correlation were used to generate estimates for parameters underpinning validity evidence. RESULTS: A total of 1612 people completed the survey, 100 to 400 people across the 6 country-language strata. The proportion of people rating the items as extremely or quite important ranged from 60 to 90%, with no important differences between men and women and few differences between strata. A single-factor structure was supported. The ordinality of the response options justified an additive total score yielding a near normal distribution (mean: 33.1; SD: 11.5; range 0-51). Correlations with other measures of converging constructs were of moderate strength (~ 0.50), and differences across groups known to affect functioning and health were observed, suggesting a Miminal Important Difference (MID) of 6 out of 51. CONCLUSION: The results of this study provide evidence that the 17-item OPAL measure is fit for the purpose of estimating the extent to which older persons are living actively at one point in time.

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.

Components of a Behavior Change Model Drive Quality of Life in Community-Dwelling Older Persons.

This study aimed to inform a measurement approach for older persons who wish to engage in active living such as participating in a walking program. The Patient Generated Index, an individualized measurement approach, and directed and summative content analyses were carried out. A sample size of 204 participants (mean age 75 years; 62% women) was recruited; it generated 934 text threads mapped to 460 unique categories within 45 domains with similarities and differences for women and men. The Capability, Opportunity, Motivation, and Behaviors Model best linked the domains. The results suggest that older persons identify the need to overcome impaired capacity, low motivation, and barriers to engagement to live actively. These are all areas that active living programs could address. How to measure the outcomes of these programs remains elusive.

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.

Participation in and outcomes from a 12-month tailored exercise programme for people with multiple sclerosis (MSTEP©): a randomized trial.

OBJECTIVE: To estimate, among people with multiple sclerosis, the extent to which a personally tailored exercise programme (MSTEP©) resulted in greater improvements in exercise capacity and related outcomes over 12 months in comparison with general exercise guidelines. DESIGN: Two-group randomized trial. SUBJECTS: Ambulatory and sedentary. INTERVENTIONS: MSTEP©, a personally adapted exercise regimen done on most days including two days of high intensity exercise; guidelines recommending 30 minutes of moderate intensity aerobic and strength training two times per week. MAIN MEASURES: Primary outcome was peak oxygen consumption (VO2peak) at 12 months; secondary outcomes were composite measures of physical function, fatigue, and health-related quality of life. RESULTS: In total, 137 people were randomized, 66 were lost over 12 months leaving 71 with outcome data, 34 in MSTEP© group, and 37 in the Guideline group. Exercise enjoyment and confidence and exercise-induced fatigue predicted retention. There were no differences between groups on the proportion making a 10% increase in VO2peak (27.1% MSTEP© vs 29.6% Guidelines; OR: 0.83; 95% CI: 0.23-3.08) by the 12 month assessment. The effect on fatigue was larger in the MSTEP© group than the Guideline groups (OR: 1.59; 95% CI: 0.93-2.74), the effect on physical function was more modest (OR: 1.35; 95% CI: 0.80-2.25), and null for health-related quality of life outcomes. CONCLUSIONS: The disappointing exercise retention suggests that people with multiple sclerosis may not consider exercise important to their brain health. Either type of exercise resulted in stable exercise capacity over 1 year in those sticking with the programme.

Comparison Between Common Performance-Based Tests and Self-Reports of Physical Function in People With Multiple Sclerosis: Does Sex or Gender Matter?

OBJECTIVE: To estimate the extent to which sex or gender differences affect the relations between tests of physical performance and self-reports about function in everyday life activities. Ecological validity is an important psychometric property when choosing tests of physical function, because they need to relate to everyday function. In multiple sclerosis (MS), the EQUI scale, modified Canadian Aerobic Fitness Test, grip strength, vertical jump, push-up, partial curl-up, gait speed (comfortable or fast), 6-minute walk test, and 9-hole peg test are commonly used but the extent to which they relate to everyday function is understudied and the extent to which ecological validity of these tests differ between women and men is unknown. DESIGN: A cross-sectional analysis was conducted on a random sample of men and women recruited for a study on the life effect of MS. Correlations between pairs of performance outcome (PerfO) and self-reported outcome (SRO) items pairs of variables with theoretical coherence were calculated and gender effects identified using linear regression. SETTING: Participants were recruited from MS clinic at Montreal Neurological Hospital. PARTICIPANTS: The sample (N=188) consisted of 140 women and 48 men with MS. INTERVENTIONS: Not applicable. RESULTS: The mean age ± SD of the participants was 43±10. Sixty PerfO and SRO items yielded 165 theoretically linked pairs separately for women and men. Of these 330 possible pairs, 77 pairs (23%) had correlations ≥0.8, showing strong support for the link between performance tests and everyday function; 203 pairs provided moderate support (r≥0.5). Thirty-one pairs had a statistically significant interaction with gender with men having higher correlations than women (n=27/31). CONCLUSION: The results support the ecological validity for physical performance tests, particularly balance tests and particularly for men. The observation that many indicators of everyday function derived from SROs were related to physical performance supports the routine use of SROs in clinical practice to guide therapy to meet the needs of clients with MS.

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.

Development of a trigger tool to identify adverse events and harm in Emergency Medical Services.

BACKGROUND: Adverse event(AE) detection in healthcare has traditionally relied upon several methods including: patient care documentation review, mortality and morbidity review, voluntary reporting, direct observation and complaint systems. A novel sampling strategy, known as the trigger tool (TT) methodology, has been shown to provide a more robust and valid method of detection. The aim of this research was to develop and assess a TT specific to ground-based Emergency Medical Services, to identify cases with the potential risk for adverse events and harm. METHODS: The study was conducted between March and December 2015. A literature review identified 57 potential triggers, which were grouped together by experts using an affinity process. Triggers for other areas of potential AE/harm were additionally considered for inclusion. An interim TT consisting of nine triggers underwent five iterative rounds of derivation tests of 20 random patient care records (n=100) in two emergency medical services. A final eight-item trigger list underwent a large sample (n=9836) assessment of test characteristics. RESULTS: The final eight-item TT consisted of triggers divided amongst four categories: Clinical, Medication, Procedural and Return-Call. The TT demonstrated an AE identification rate of 41.5% (sensitivity 79.8% (95% CI, 69.9% to 87.6%); specificity 58.5% (95% CI, 52% to 64.8%)). When identifying potential risk for harm, the TT demonstrated a harm identification rate of 19.3% (sensitivity 97.1% (95% CI, 84.7% to 99.9%); specificity 53.5% (95% CI, 47.7% to 59.3%)). DISCUSSION: The Emergency Medical Services Trigger Tool (EMSTT) may be used as a sampling strategy similar to the Global Trigger Tool, to identify and measure AE and harm over time, and monitor the success of improvement initiatives within the Emergency Medical Services setting.

Movement visualisation in virtual reality rehabilitation of the lower limb: a systematic review.

BACKGROUND: Virtual reality (VR) based applications play an increasing role in motor rehabilitation. They provide an interactive and individualized environment in addition to increased motivation during motor tasks as well as facilitating motor learning through multimodal sensory information. Several previous studies have shown positive effect of VR-based treatments for lower extremity motor rehabilitation in neurological conditions, but the characteristics of these VR applications have not been systematically investigated. The visual information on the user's movement in the virtual environment, also called movement visualisation (MV), is a key element of VR-based rehabilitation interventions. The present review proposes categorization of Movement Visualisations of VR-based rehabilitation therapy for neurological conditions and also summarises current research in lower limb application. METHODS: A systematic search of literature on VR-based intervention for gait and balance rehabilitation in neurological conditions was performed in the databases namely; MEDLINE (Ovid), AMED, EMBASE, CINAHL, and PsycInfo. Studies using non-virtual environments or applications to improve cognitive function, activities of daily living, or psychotherapy were excluded. The VR interventions of the included studies were analysed on their MV. RESULTS: In total 43 publications were selected based on the inclusion criteria. Seven distinct MV groups could be differentiated: indirect MV (N = 13), abstract MV (N = 11), augmented reality MV (N = 9), avatar MV (N = 5), tracking MV (N = 4), combined MV (N = 1), and no MV (N = 2). In two included articles the visualisation conditions included different MV groups within the same study. Additionally, differences in motor performance could not be analysed because of the differences in the study design. Three studies investigated different visualisations within the same MV group and hence limited information can be extracted from one study. CONCLUSIONS: The review demonstrates that individuals' movements during VR-based motor training can be displayed in different ways. Future studies are necessary to fundamentally explore the nature of this VR information and its effect on motor outcome.

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.

Hospital accreditation: lessons from low- and middle-income countries.

The growth of accreditation programs in low- and middle-income countries (LMICs) provides important examples of innovations in leadership, governance and mission which could be adopted in developed countries. While these accreditation programs in LMICs follow the basic structure and process of accreditation systems in the developed world, with written standards and an evaluation by independent surveyors, they differ in important ways. Their focus is primarily on improving overall care country-wide while supporting the weakest facilities. In the developed world accreditation efforts tend to focus on identifying the best institutions as those are typically the only ones who can meet stringent and difficult evaluative criteria. The Joint Learning Network for Universal Health Coverage (JLN), is an initiative launched in 2010 that enables policymakers aiming for UHC to learn from each other's successes and failures. The JLN is primarily comprised of countries in the midst of implementing complex health financing reforms that involve an independent purchasing agency that buys care from a mix of public and private providers [Lancet 380: 933-943, 2012]. One of the concerns for participating countries has been how to preserve or improve quality during rapid expansion in coverage. Accreditation is one important mechanism available to countries to preserve or improve quality that is in common use in many LMICs today. This paper describes the results of a meeting of the JLN countries held in Bangkok in April of 2013, at which the current state of accreditation programs was discussed. During that meeting, a number of innovative approaches to accreditation in LMICs were identified, many of which, if adopted more broadly, might enhance health care quality and patient safety in the developed world.

Accreditation as a path to achieving universal quality health coverage.

As many low- and middle-income countries (LMICs) pursue health care reforms in order to achieve universal health coverage (UHC), development of national accreditation systems has become an increasingly common quality-enhancing strategy endorsed by payers, including Ministries of Health. This article describes the major considerations for health system leaders in developing and implementing a sustainable and successful national accreditation program, using the 20-year evolution of the Thai health care accreditation system as a model. The authors illustrate the interface between accreditation as a continuous quality improvement strategy, health insurance and other health financing schemes, and the overall goal of achieving universal health coverage.

Inpatient mortality of HIV-infected adults in sub-Saharan Africa and possible interventions: a mixed methods review.

BACKGROUND: Despite the increased availability of anti-retroviral therapy, in-hospital HIV mortality remains high in sub-Saharan Africa. Reports from Senegal, Malawi, and Tanzania show rates of in-hospital, HIV-related mortality ranging from 24.2% to 44%. This mixed methods review explored the potential causes of preventable in-hospital mortality associated with HIV infections in sub-Saharan Africa in the anti-retroviral era. RESULTS: Based on our experience as healthcare providers in Africa and a review of the literature we identified 5 health systems failures which may cause preventable in-hospital mortality, including: 1) late presentation of HIV cases, 2) low rates of in-hospital HIV testing, 3) poor laboratory capacity which limits CD4 T-cell testing and the diagnosis of opportunistic infections, 4) delay in initiation of anti-retroviral therapy in-hospital, and 5) problems associated with loss to follow-up upon discharge from hospital. CONCLUSION: Our findings, together with the current available literature, should be used to develop practical interventions that can be implemented to reduce in-hospital 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.

Evaluating health perceptions of soft-tissue sarcoma patients using the Wilson-Cleary Model to identify key targets for improving outcomes and quality of care.

INTRODUCTION: Soft-tissue sarcoma (STS) is a rare cancer of the connective tissues requiring invasive treatment. Due to the complexity of treatment, STS patients experience more functional impairment and disability than other oncologic populations. Given that extant literature is unclear and exclusively focused on physical function, the objectives of this study were to use the Wilson-Cleary Model of HRQL to evaluate the extent to which biological function (tumor site, depth and size), symptoms (fatigue, pain, anxiety/depression), and functional status are associated with the health perceptions of soft-tissue sarcoma patients 12 months post-op. METHODS: Data were drawn from an inception cohort study at the McGill University Health Centre. Inclusion criteria included 18 years of age and a biopsy-confirmed diagnosis of STS. Those with evidence of metastasis at diagnosis or less than 12 months of follow-up were excluded. Statistical analyses included T-tests, Pearson correlations, and multiple linear regression. RESULTS: 331 patients were included (185 males, 146 females) with mean (SD) ages of 56 (17). Significantly more females reported pain and anxiety/depression. Self-reported function was significantly higher in males. Overall, the regression model explained 53 % of the variance in health perceptions in males, and 48 % in females. Only self-reported function was significantly associated with health perceptions in males (B = 0.34) and females (B = 0.48). Further, compared to females without pain, females with pain perceived their health as significantly worse. CONCLUSION: Evaluating health perceptions with a multidimensional lens revealed new information about the STS patient experience. Findings suggest that key targets include routine psychosocial distress monitoring and addressing rectifiable disability-related barriers promptly.

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.