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Increasing numbers of adults are living with the health-related consequences of Long COVID. The Episodic Disability Framework (EDF), derived from perspectives of adults living with HIV, characterizes the multi-dimensional and episodic nature of health-related challenges (disability) experienced by an individual. Our aim was to determine the applicability of the Episodic Disability Framework to conceptualize the health-related challenges experienced among adults living with Long COVID. We conducted a community-engaged qualitative descriptive study involving online semi-structured interviews. We recruited adults who self-identified as living with Long COVID via collaborator community organizations in Canada, Ireland, United Kingdom, and United States. We purposively recruited for diversity in age, gender identity, ethnicity, sexual orientation, and time since initial COVID-19 infection. We used a semi-structured interview guide informed by the EDF to explore experiences of disability living with Long COVID, specifically health-related challenges and how challenges were experienced over time. We conducted a group-based content analysis. Of the 40 participants, the median age was 39 years; and the majority were white (73%), women (63%), living with Long COVID for ≥ 1 year (83%). Consistent with the Episodic Disability Framework, disability was described as multi-dimensional and episodic, characterized by unpredictable periods of health and illness. Experiences of disability were consistent with the three main components of the Framework: A) dimensions of disability (physical, cognitive, mental-emotional health challenges, difficulties with day-to-day activities, challenges to social inclusion, uncertainty); B) contextual factors, extrinsic (social support; accessibility of environment and health services; stigma and epistemic injustice) and intrinsic (living strategies; personal attributes) that exacerbate or alleviate dimensions of disability; and C) triggers that initiate episodes of disability. The Episodic Disability Framework provides a way to conceptualize the multi-dimensional and episodic nature of disability experienced by adults living with Long COVID. The Framework provides guidance for future measurement of disability, and health and rehabilitation approaches to enhance practice, research, and policy in Long COVID.

The reality of Long COVID emerged soon after the beginning of the COVID-19 pandemic. More than five years later, thousands of articles have been published with multiple case definitions, heterogenous populations, and numerous measurement instruments, yielding a massive amount of evidence. Health outcome measurement is vital for identifying health challenges, changes in health status and predicting future health states for people with Long COVID. Nevertheless, distinct issues of measurement require attention in the context of Long COVID. In this commentary, we discuss complexities, challenges and considerations associated with health outcome measurement in research and clinical practice with people with Long COVID. Specifically, we address: (i) identifying the population in the context of variable terminology, definitions and symptoms affecting people with Long COVID; (ii) identifying the complexity of health constructs, often multidimensional, to measure with numerous health-related consequences associated with Long COVID; (iii) identifying the purpose of measurement while taking into account the dynamic nature of Long COVID and (iv) identifying appropriate outcome measures used with people with Long COVID and their limitations. We highlight important considerations for measurement in research and clinical practice, including the impacts of the various symptoms and the dynamic nature of Long COVID. We provide examples of outcome measures used to date in the context of Long COVID to illustrate the complexities throughout, with a glimpse at wider consequences. We conclude with a brief discussion of considerations to help pave the way forward for the improvement in health outcomes measurement in Long COVID research and clinical practice. Advancing knowledge on Long COVID requires a return to the fundamentals of measurement science. It is critical to appropriately assess the measurement properties of existing instruments for their ability to accurately and reliably measure health-related constructs associated with this condition. Identifying limitations of currently used tools is also essential to prevent perpetuation of issues in the development of condition-specific measurement instruments for Long COVID. This, in turn, will help pave the way for more robust measurement and improved data interpretation in the context of Long COVID.

IntroductionOur aim was to describe episodic nature of disability among adults living with Long COVID.MethodsWe 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.ResultsAmong 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.ConclusionAmong 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.

ObjectivesTo explore experiences of physiotherapists working with adults living with Long COVID in Canada.DesignCross-sectional descriptive qualitative study involving online semi-structured interviews.ParticipantsWe recruited physiotherapists in Canada who self-identified as having clinically treated one or more adults living with Long COVID in the past year.Data collectionUsing an interview guide, we inquired about physiotherapists’ knowledge of Long COVID, assessment and treatment experiences, perspectives on physiotherapists’ roles, contextual and implementation factors influencing rehabilitative outcomes, and their recommendations for Long COVID rehabilitation. Interviews were audio-recorded, transcribed verbatim and analysed using a group-based thematic analytical approach. We administered a demographic questionnaire to describe sample characteristics.Results13 physiotherapists from five provinces participated; most were women (n=8; 62%) and practised in urban settings (n=11; 85%). Participants reported variable amounts of knowledge of existing guidelines and experiences working with adults living with Long COVID in the past year. Physiotherapists characterised their experiences working with adults living with Long COVID as a dynamic process involving: (1) a disruption to the profession (encountering a new patient population and pivoting to new models of care delivery), followed by (2) a cyclical process of learning curves and evolving roles of physiotherapists working with persons living with Long COVID (navigating uncertainty, keeping up with rapidly emerging evidence, trial and error, adapting mindset and rehabilitative approaches and growing prominence of roles as advocate and collaborator). Participants recommended the need for education and training, active and open-minded listening with patients, interdisciplinary models of care, and organisational- and system-level improvements to foster access to care.ConclusionsPhysiotherapists’ experiences involved a disruption to the profession followed by a dynamic process of learning curves and evolving roles in Long COVID rehabilitation. Not all participants demonstrated an in-depth understanding of existing Long COVID rehabilitation guidelines. Results may help inform physiotherapy education in Long COVID rehabilitation.

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.

Introduction Long Covid and other infection‐associated chronic condition communities have been integral in advocating for patient engagement in all stages of research, from design and conduct, and implementation, through to interpretation and knowledge translation; nevertheless, the process varies across research teams. In this paper, we (1) describe our process undertaking a community‐engaged Long Covid research study; (2) evaluate our community‐engaged approach, highlighting strengths and limitations with our process; and (3) identify recommendations for engaging in community‐engaged patient‐oriented research in Long Covid. Methods Guided by the 4PI (Principles; Purpose; Presence; Process; Impact) Framework and Patient‐Led Research Scorecards, we describe our community‐engaged approach within the Long COVID and Episodic Disability Study, followed by an evaluation of our community engagement using a multistage consultation with members of the Long COVID and Episodic Disability Study team. We conducted an online group‐based discussion among persons with lived experiences and administered a web‐based Scorecard questionnaire rating the collaboration as it relates to four domains of patient burden, governance, integration into the research process, and organisation readiness to all members of the team, to assess strengths and limitations of our approach. Scores ranged from −2 (non‐collaboration) to +2 (ideal collaboration). Results Ten team members, five of whom were persons with lived experiences, completed the Scorecard questionnaire. Median Scorecard scores ranged from +1 to +2 for all domains. Five team members with lived experiences, representing four community support groups and organisations that participated in the community‐engagement discussion. We describe the practices and principles that enabled meaningful community engagement, with the strengths and limitations of our approach embedded throughout. Conclusion Our community‐engaged approach to the Long COVID and Episodic Disability Study enhanced the quality and relevance of the study to the community while highlighting areas to heighten meaningful engagement throughout. This study builds on foundational community‐based research principles of patient‐oriented research. Recommendations derived from our experiences may be used by other research teams conducting community‐engaged patient‐oriented research. Patient or Public Contribution The Long COVID and Episodic Disability Study is a community‐engaged research study involving 25 members, including 12 persons living with long Covid, 13 researchers and 5 clinicians (categories are not mutually exclusive), referred to as the Full Team. Persons with lived experiences possessed a range of professional and personal experiences spanning research, clinical, policy and private sector/business contexts; team members wore multiple hats and perspectives which collectively strengthened the diversity of expertise, perspectives and insights to the team and process. Engagement of people with lived experiences with Long Covid ensured that the study was fully co‐created with people living with Long Covid. During the development of the study proposal, community partners from organisations in Canada, Ireland, the United Kingdom and the United States, who were linked to larger networks of people living with Long Covid, were purposefully invited to join the study team. Several Long Covid community networks and organisations, represented by persons living with Long Covid, were involved in all stages of the research, including: COVID Long‐Haulers Support Group Canada (S.G.); Long COVID Advocacy Ireland (I.O., S.O. and R.S.); Long COVID Ireland (N.R. and R.S.); Long COVID Physio (D.A.B. and C.T.); Long Covid Support UK (M.O.H.); and Patient‐Led Research Collaborative (L.M., N.M. and H.W.). These representatives along with the Co‐PIs (K.K.O. and D.A.B.) and co‐ordinator (K.M.) comprised the Core Long COVID and Episodic Disability Community Collaborator Team (Core Team). Team members with lived experiences were provided yearly remuneration for their time and expertise dedicated to the study, either as an individual, or to the community organisation which they represented on the study according to their preference.

IntroductionOur aim is to develop a Framework of Measurement for people living with Long COVID and their caregivers for use in Long COVID research and clinical practice. Specifically, we will characterise evidence pertaining to outcome measurement and identify implementation considerations for use of outcome measures among adults and children living with Long COVID and their caregivers.Methods and analysisWe will conduct a scoping study involving: (1) an evidence review and (2) a two-phased consultation, using methodological steps outlined by the Arksey and O’Malley Framework and Joanna Briggs Institute. We will answer the following question: What is known about outcome measures used to describe, evaluate or predict health outcomes among adults and children living with Long COVID and their caregivers? Evidence review: we will review peer review published and grey literature to identify existing outcome measures and their reported measurement properties with people living with Long COVID and their caregivers. We will search databases including MEDLINE, Embase, CINAHL, PsycINFO and Scopus for articles published since 2020. Two authors will independently review titles and abstracts, followed by full text to select articles that discuss or use outcome measures for Long COVID health outcomes, pertain to adults or children living with Long COVID and/or their caregivers and are based in research or clinical settings. We will extract data including article characteristics, terminology and definition of Long COVID, health outcomes assessed, characteristics of outcome measures, measurement properties and implementation considerations. We will collate and summarise data to establish a preliminary Framework of Measurement. Consultation phase 1: we will conduct an environmental scan involving a cross-sectional web-based questionnaire among individuals with experience using or completing outcome measures for Long COVID, to identify outcome measures not found in the evidence review and explore implementation considerations for outcome measurement in the context of Long COVID. Consultation phase 2: we will conduct focus groups to review the preliminary Framework of Measurement and to highlight implementation considerations for outcome measurement in Long COVID. We will analyse questionnaire and focus group data using descriptive and content analytical approaches. We will refine the Framework of Measurement based on the focus group consultation using community-engaged approaches with the research team.Ethics and disseminationProtocol approved by the University of Toronto Health Sciences Research Ethics Board (protocol #46503) for the consultation phases of the study. Outcomes will include a Framework of Measurement, to enhance measurement of health outcomes in Long COVID research and clinical practice. Knowledge translation will also occur in the form of publications and presentations.

IntroductionOur 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 analysisWe 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 disseminationProtocol 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 numberNCT05006391.

Background Long COVID is a multisystem condition that negatively impacts daily function. Pacing is a self-management strategy to mitigate symptoms. Our aim was to describe experiences of pacing from the perspectives of adults living with Long COVID. Methods We conducted a community-engaged qualitative descriptive study involving one-on-one online interviews with adults living with Long COVID from Canada, Ireland, United Kingdom, and United States to explore experiences of disability. We asked participants about strategies they used to deal with health challenges living with Long COVID. Interviews were audio recorded and transcribed verbatim. We analyzed data using group-based content analytical techniques. Results Among the 40 participants living with Long COVID, the majority were women ( n  = 25; 63%), white ( n  = 29;73%) and heterosexual ( n  = 30;75%). The median age of participants was 39 years (25th, 75th percentile: 32, 49). Most participants ( n  = 37;93%) used pacing to mitigate or prevent symptoms. Participants described experiences of pacing across five main areas: (1) using pacing as a living strategy (pacing to mitigate multidimensional health challenges; applying pacing to many types of activities; process of pacing experienced as a moving target; pacing experienced as a helpful strategy, but not a cure for Long COVID); (2) learning how to pace (acquiring knowledge about pacing; developing strategies and skills to support pacing); (3) encountering challenges with pacing (learning how to pace; experiencing inequitable access to pacing; experiencing stigma and judgement; undergoing psychological and emotional adjustment from beliefs of ‘fighting’ or ‘pushing through’ to balancing rest with activity; making sacrifices; and encountering unexpected obstacles); (4) experiencing consequences of not pacing; and (5) conceptualising and describing pacing using analogies or metaphors. Conclusions Pacing is a challenging and complex strategy used to mitigate symptoms of Long COVID. Healthcare providers should work collaboratively with patients to further refine and implement this strategy, when appropriate.

Purpose: We assessed the sensibility, utility, and implementation considerations of the Short-Form HIV Disability Questionnaire (SF-HDQ) in community-based settings. Methods: We conducted a mixed-methods study with adults living with HIV and community providers in seven community sites in Canada. We administered the SF-HDQ, a sensibility questionnaire and conducted semi-structured interviews. The SF-HDQ was sensible if median scores were ≥5/7(adults living with HIV) and ≥4/7(community providers) for ≥80% of the sensibility questionnaire items. Qualitative interview data were analyzed using content analysis. Results: Median sensibility scores were ≥5 for adults living with HIV (n = 44) and ≥4 for community providers (n = 10) for 95% and 100% of items, respectively. The SF-HDQ is comprehensive, represented disability, captured its episodic nature, and was easy to complete. Community utility included: facilitating communication and engagement with community; taking a snapshot of disability and tracking changes over time; guiding referrals; fostering self-reflection; and informing community programs. Considerations for implementation included flexible, person-centered approaches to mode and processes of administration, and communicating scores based on personal preferences among persons living with HIV. Conclusion: The SF-HDQ possesses sensibility and utility for use in community-based settings.