Episodic disability questionnaire (EDQ) measurement properties among adults living with HIV in Canada, Ireland, United Kingdom, and United States.

BACKGROUND: The Episodic Disability Questionnaire (EDQ) is a generic 35-item patient-reported outcome measure of presence, severity and episodic nature of disability. We assessed the measurement properties of the Episodic Disability Questionnaire (EDQ) with adults living with HIV. METHODS: We conducted a measurement study with adults living with HIV in eight clinical settings in Canada, Ireland, United Kingdom, and United States. We electronically administered the EDQ followed by three reference measures (World Health Organization Disability Assessment Schedule; Patient Health Questionnaire; Social Support Scale) and a demographic questionnaire. We administered the EDQ only 1 week later. We assessed the internal consistency reliability (Cronbach's alpha; > 0.7 acceptable), and test-retest reliability (Intra Class Correlation Coefficient; > 0.7 acceptable). We estimated required change in EDQ domain scores to be 95% certain that a change was not due to measurement error (Minimum Detectable Change (MDC95%)). We evaluated construct validity by assessing 36 primary hypotheses of relationships between EDQ scores and scores on the reference measures (> 75% hypotheses confirmed indicated validity). RESULTS: Three hundred fifty nine participants completed the questionnaires at time point 1, of which 321 (89%) completed the EDQ approximately 1 week later. Cronbach's alpha for internal consistency ranged from 0.84 (social domain) to 0.91 (day domain) for the EDQ severity scale, and 0.72 (uncertainty domain) to 0.88 (day domain) for the EDQ presence scale, and 0.87 (physical, cognitive, mental-emotional domains) to 0.89 (uncertainty domain) for the EDQ episodic scale. ICCs for test-retest reliability ranged from 0.79 (physical domain) to 0.88 (day domain) for the EDQ severity scale and from 0.71 (uncertainty domain) to 0.85 (day domain) for the EDQ presence scale. Highest precision was demonstrated in the severity scale for each domain (MDC95% range: 19-25 out of 100), followed by the presence (MDC95% range: 37-54) and episodic scales (MDC95% range:44-76). Twenty-nine of 36 (81%) construct validity hypotheses were confirmed. CONCLUSIONS: The EDQ possesses internal consistency reliability, construct validity, and test-retest reliability, with limited precision when administered electronically with adults living with HIV across in clinical settings in four countries. Given the measurement properties, the EDQ can be used for group level comparisons for research and program evaluation in adults living with HIV.

A framework of research priorities in COVID rehabilitation from the Rehabilitation Science Research Network for COVID: an international consultation involving qualitative and quantitative research.

PURPOSE: To identify research priorities related to COVID rehabilitation from the perspectives of persons with lived experiences, clinicians, researchers, community organization and policy representatives. MATERIALS & METHODS: We conducted five international consultations to identify key issues and research priorities in COVID rehabilitation using (i) web-based questionnaires, (ii) synchronous discussions, and (iii) content analysis of COVID rehabilitation research conference presentations. We collated responses and notes and then analyzed data using content analytical techniques. RESULTS: The Framework of Research Priorities in COVID Rehabilitation includes five priorities that span health and disability across COVID-19 and Long COVID illness trajectories: (1) understanding experiences of episodic disability; (2) assessing episodic disability; (3) identifying and examining safe approaches to rehabilitation; (4) examining the role, implementation, and impact of models of rehabilitation care; and (5) examining access to safe, timely and appropriate rehabilitation and other health care provider services. The Framework identifies target populations, methodological considerations, and highlights the importance of integrated knowledge translation and exchange in advancing scientific evidence, clinical education, practice, and COVID rehabilitation policy. CONCLUSIONS: This Framework provides a foundation to advance COVID, disability and rehabilitation research to advance the health and well-being of persons with COVID-19, Long COVID, and their caregivers.Implications for rehabilitationPersons with COVID-19 or Long COVID and their caregivers may experience multi-dimensional forms of disability spanning physical, cognitive, emotional health challenges, difficulties with daily function, and social inclusion, which individually and/or collectively may be unpredictable, episodic and/or chronic in nature.Rehabilitation has a role in preventing or mitigating disability and enhancing health outcomes for persons with COVID-19, Long COVID and their caregivers.The Framework of Research Priorities COVID Rehabilitation includes five overlapping research priorities spanning health and disability across COVID trajectories: (1) understanding experiences of episodic disability; (2) assessing episodic disability; (3) identifying and examining safe approaches to rehabilitation; (4) examining the role, implementation, and impact of models of rehabilitation care; and (5) examining access to safe, timely and appropriate rehabilitation and other health care provider services.The research priorities in the Framework represent a comprehensive approach to examine disability and rehabilitation across COVID illness trajectories and the broad continuums of rehabilitation care to provide a coordinated and collaborative approach to advancing evidence in COVID disability and rehabilitation.This Framework provides a foundation for international and interdisciplinary collaborations, to advance COVID disability and rehabilitation research to enhance health outcomes of persons with COVID-19, Long COVID, and their caregivers.

HIV in MOTION: a community of practice on physical rehabilitation for and by people living with HIV and their allies.

Background: This paper describes the design, implementation, and evaluation of a community of practice (CoP), HIV in MOTION (HIM), to advance physical activity rehabilitation interventions with adults living with HIV, clinicians, researchers, and representatives from community-based organizations. We attracted a diverse audience of geographically dispersed people living with HIV, clinicians, exercise personnel, and trainees to eight HIM community of practice events that featured the clinical, research, and lived experience of people living with HIV. HIV in MOTION had (a) a domain related to physical rehabilitation, exercise, and social participation for people living with HIV; (b) a community of diverse individuals; and (c) a practice, that is, a series of sustained interactions online and offline, synchronous, and asynchronous. Our team included six diverse people living with HIV, two coordinators, and three academic researchers who planned, prepared, implemented, and evaluated each online session. To evaluate the HIV in MOTION CoP, we employed an evaluation framework composed of five criteria: Goals and Scope, Context and Structure, Process and Activities, Outcomes, and Impact. We collected quantitative and qualitative evaluative data using online evaluation, audiovisual archiving, and participant observations during the debriefing with all members of our team. Results: We widened the Goals and Scope of the HIV in MOTION CoP to include the HIV narrative of lived experiences, including autopathography, and participant storytelling. In matters of Context and Structure, we received explicit satisfaction with our governance and leadership. Also, being flexible to fit online formats was a productive strategy that made the HIV in MOTION CoP sessions agile and amenable to audiovisual archiving. Our indicators of success in Process, Activities, and Outcomes included participant retention online, elicited verbal interventions and comments in the chat room, and a rate of three repeat visits online. The indicators of success of Impact were the presence of voluntary and unscripted autopathography, the patient storytelling and how it reportedly caused changes in the participants, and the "legitimate peripheral participation" of emerging research and clinical students. In conclusion, we recommend our form of CoP for mixing the knowledge of diverse persons in this area. However, we recommend considering budget and burnout as serious challenges to sustainability.

Piloting an online telecoaching community-based exercise intervention with adults living with HIV: protocol for a mixed-methods implementation science study.

INTRODUCTION: Our aim is to evaluate the implementation of an online telecoaching community-based exercise (CBE) intervention with the goal of reducing disability and enhancing physical activity and health among adults living with HIV. METHODS AND ANALYSIS: We will conduct a prospective longitudinal mixed-methods two-phased intervention study to pilot the implementation of an online CBE intervention with ~30 adults (≥18 years) living with HIV who consider themselves safe to participate in exercise. In the intervention phase (0-6 months), participants will take part in an online CBE intervention involving thrice weekly exercise (aerobic, resistance, balance and flexibility), with supervised biweekly personal training sessions with a fitness instructor, YMCA membership providing access to online exercise classes, wireless physical activity monitor to track physical activity and monthly online educational sessions on topics related to HIV, physical activity and health. In the follow-up phase (6-12 months), participants will be encouraged to continue independent exercise thrice weekly. Quantitative assessment: Bimonthly, we will assess cardiopulmonary fitness, strength, weight, body composition and flexibility, followed by administering self-reported questionnaires to assess disability, contextual factor outcomes (mastery, engagement in care, stigma, social support), implementation factors (cost, feasibility, technology), health status and self-reported physical activity. We will conduct a segmented regression analyses to describe the change in level and trend between the intervention and follow-up phases. Qualitative assessment: We will conduct online interviews with a subsample of ~10 participants and 5 CBE stakeholders at baseline (month 0), postintervention (month 6) and end of follow-up (month 12) to explore experiences, impact and implementation factors for online CBE. Interviews will be audiorecorded and analysed using content analytical techniques. ETHICS AND DISSEMINATION: Protocol approved by the University of Toronto Research Ethics Board (Protocol # 40410). Knowledge translation will occur in the form of presentations and publications in open-access peer-reviewed journals. TRIAL REGISTRATION NUMBER: NCT05006391.

Conceptualising the episodic nature of disability among adults living with Long COVID: a qualitative study.

INTRODUCTION: Our aim was to describe episodic nature of disability among adults living with Long COVID. METHODS: We conducted a community-engaged qualitative descriptive study involving online semistructured interviews and participant visual illustrations. We recruited participants via collaborator community organisations in Canada, Ireland, UK and USA.We recruited adults who self-identified as living with Long COVID with diversity in age, gender, race/ethnicity, sexual orientation and duration since initial COVID infection between December 2021 and May 2022. We used a semistructured interview guide to explore experiences of disability living with Long COVID, specifically health-related challenges and how they were experienced over time. We asked participants to draw their health trajectory and conducted a group-based content analysis. RESULTS: Among the 40 participants, the median age was 39 years (IQR: 32-49); majority were women (63%), white (73%), heterosexual (75%) and living with Long COVID for ≥1 year (83%). Participants described their disability experiences as episodic in nature, characterised by fluctuations in presence and severity of health-related challenges (disability) that may occur both within a day and over the long-term living with Long COVID. They described living with 'ups and downs', 'flare-ups' and 'peaks' followed by 'crashes', 'troughs' and 'valleys', likened to a 'yo-yo', 'rolling hills' and 'rollercoaster ride' with 'relapsing/remitting', 'waxing/waning', 'fluctuations' in health. Drawn illustrations demonstrated variety of trajectories across health dimensions, some more episodic than others. Uncertainty intersected with the episodic nature of disability, characterised as unpredictability of episodes, their length, severity and triggers, and process of long-term trajectory, which had implications on broader health. CONCLUSION: Among this sample of adults living with Long COVID, experiences of disability were described as episodic, characterised by fluctuating health challenges, which may be unpredictable in nature. Results can help to better understand experiences of disability among adults living with Long COVID to inform healthcare and rehabilitation.

Episodic Disability Questionnaire (EDQ) measurement properties among adults living with HIV in Canada, Ireland, United Kingdom, and United States.

Background: The Episodic Disability Questionnaire (EDQ) is a generic 35-item patient-reported outcome measure of presence, severity and episodic nature of disability. We assessed the measurement properties of the Episodic Disability Questionnaire (EDQ) with adults living with HIV. Methods: We conducted a measurement study with adults living with HIV in eight clinical settings in Canada, Ireland, United Kingdom, and United States. We electronically administered the EDQ followed by three reference measures (World Health Organization Disability Assessment Schedule; Patient Health Questionnaire; Social Support Scale) and a demographic questionnaire. We administered the EDQ only 1 week later. We assessed the internal consistency reliability (Cronbach's alpha; >0.7 acceptable), and test-retest reliability (Intra Class Correlation Coefficient; >0.7 acceptable). We estimated required change in EDQ domain scores to be 95% certain that a change was not due to measurement error (Minimum Detectable Change (MDC95%)). We evaluated construct validity by assessing 36 primary hypotheses of relationships between EDQ scores and scores on the reference measures (> 75% hypotheses confirmed indicated validity). Results: 359 participants completed the questionnaires at time point 1, of which 321 (89%) completed the EDQ approximately 1 week later. Cronbach's alpha for internal consistency ranged from 0.84 (social domain) to 0.91 (day domain) for the EDQ severity scale, and 0.72 (uncertainty domain) to 0.88 (day domain) for the EDQ presence scale, and 0.87 (physical, cognitive, mental-emotional domains) to 0.89 (uncertainty domain) for the EDQ episodic scale. ICCs for test-retest reliability ranged from 0.79 (physical domain) to 0.88 (day domain) for the EDQ severity scale and from 0.71 (uncertainty domain) to 0.85 (day domain) for the EDQ presence scale. Highest precision was demonstrated in the severity scale for each domain (MDC95% range: 19-25 out of 100), followed by the presence (MDC95% range: 37-54) and episodic scales (MDC95% range:44-76). Twenty-nine of 36 (81%) construct validity hypotheses were confirmed. Conclusions: The EDQ possesses internal consistency reliability, construct validity, and test-retest reliability, with limited precision when administered electronically with adults living with HIV across in clinical settings in four countries. Given the measurement properties, the EDQ can be used for group level comparisons for research and program evaluation in adults living with HIV.

Analyzing the Eye Gaze Behaviour of Students and Experienced Physiotherapists during Observational Movement Analysis.

Purpose: Physiotherapists use observational movement analysis (OMA) to inform clinical reasoning. This study aimed to (1) determine the feasibility of characterizing eye gaze behaviour during OMA with eye-tracking technology, (2) characterize experienced neurological physiotherapists' and physiotherapy students' eye gaze behaviour during OMA, and (3) investigate differences in eye gaze behaviour during OMA between physiotherapy students and experienced physiotherapists. Method: Eight students and eight physiotherapists wore an eye-tracking device while watching a video of a person with a history of stroke and subsequent concussion perform sit to stand. Feasibility criteria were (1) successful calibration of the eye tracker, and successful collection of data, for 80% of the participants and (2) moderate interrater reliability of the investigators, measured by intra-class correlation coefficients (ICCs). Three investigators independently recorded the participants' foveal fixations. Differences between physiotherapists and students in number of fixations, duration per fixation, and total duration of fixations were evaluated using unpaired t-tests, mean differences, and 95% CIs. Results: Data were collected for all participants. ICCs ranged from 0.64 to 0.78. Fixations by physiotherapists were shorter (mean 368.5 [SD 80.8] ms) and greater in number (mean 18.9 [SD 2.2]) than those by students (mean 459.0 [SD 64.2] ms, p = 0.03, and mean 15.9 [SD 2.7], p = 0.03), respectively. Conclusions: Measuring eye gaze behaviour during OMA using eye tracker technology is feasible. Physiotherapists made more fixations of shorter duration than students. Further investigation of how experienced therapists perform OMA and apply it to clinical reasoning may inform the instruction of OMA.

Objectif : les physiothérapeutes font appel à l'analyse observationnelle des mouvements (AOM) pour éclairer leur raisonnement clinique. La présente étude visait à 1) déterminer la faisabilité de caractériser le comportement du regard pendant l'AOM par la technologie de l'oculométrie, 2) caractériser le comportement du regard des physiothérapeutes neurologiques expérimentés et des étudiants en physiothérapie pendant l'AOM et 3) examiner les différences de comportement du regard des élèves physiothérapeutes par rapport aux physiothérapeutes d'expérience pendant l'AOM. Méthodologie : huit étudiants et huit physiothérapeutes ont porté un oculomètre en regardant la vidéo d'une personne ayant des antécédents d'accident vasculaire cérébral (AVC) et de commotion subséquente pour effectuer l'exercice assis-debout. Les critères de faisabilité s'établissaient comme suit : 1) la calibration réussie de l'oculomètre et la collecte réussie des données pour 80 % des participants et 2) une variabilité interévaluateurs modérée des chercheurs, mesurée par les coefficients de corrélation intraclasse (CCI). Trois chercheurs ont enregistré la fixation fovéale des participants. Ils ont évalué les différences entre les physiothérapeutes et les étudiants pour ce qui est du nombre de fixations, de la durée de chaque fixation et de la durée totale des fixations à l'aide des tests de Student non appariés, des différences moyennes et des intervalles de confiance à 95 %. Résultats : les données ont été colligées pour tous les participants. Les CCI se situaient entre 0,64 et 0,78. Les fixations des physiothérapeutes étaient plus courtes (368,5 [ÉT 80,8] ms) et plus fréquentes (18,9 [ÉT 2,2]) que celles des étudiants (459,0 [ÉT 64,2] ms, p = 0,03; 15,9 [ÉT 2,7], p = 0,03), respectivement. Conclusion : il est possible de mesurer le comportement du regard par oculométrie pendant l'AOM. Les physiothérapeutes avaient plus de fixations de courte durée que les étudiants. D'autres recherches sur la manière dont les thérapeutes d'expérience procèdent à l'AOM et l'appliquent à leur raisonnement clinique pourront éclairer les directives sur l'AOM.