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The study objectives were to measure disability prevalence and severity, and examine disability risk factors, among adults living with HIV in London, United Kingdom (UK). Self-reported questionnaires were administered: World Health Organization Disability Assessment Schedule 2.0 (WHODAS), HIV Disability Questionnaire (HDQ), Equality Act disability definition (EADD), and demographic questionnaire. We calculated proportion (95% Confidence Interval; CI) of \"severe\" and \"moderate\" disability measured using EADD and WHODAS scores ≥2 respectively. We measured disability severity with HDQ domain severity scores. We used demographic questionnaire responses to assess risk factors of \"severe\" and \"moderate\" disability using logistic regression analysis, and HDQ severity domain scores using linear regression analysis. Of 201 participants, 176 (87.6%) identified as men, median age 47 years, and 194 (96.5%) virologically suppressed. Severe disability prevalence was 39.5% (n = 79/201), 95% CI [32.5%, 46.4%]. Moderate disability prevalence was 70.5% (n = 141/200), 95% CI [64.2%, 76.8%]. Uncertainty was the most severe HDQ disability domain. Late HIV diagnosis was a risk factor for severe disability [Odds Ratio (OR) 2.71; CI 1.25, 5.87]. Social determinants of health, economic inactivity [OR 2.79; CI 1.08, 7.21] and receiving benefits [OR 2.87; CI 1.05, 7.83], were risk factors for \"severe\" disability. Economic inactivity [OR 3.14; CI 1.00, 9.98] was a risk factor for \"moderate\" disability. Economic inactivity, receiving benefits, and having no fixed abode were risk factors (P≤0.05) for higher HDQ severity scores in physical, mental and emotional, difficulty with day-to-day activities, and challenges to social participation domains. Personal factors, identifying as a woman and being aged <50 years, were risk factors (P≤0.05) for higher HDQ severity scores in mental and emotional, uncertainty, and challenges with social participation domains. People living with well-controlled HIV in London UK experienced multi-dimensional and episodic disability. Results help to better understand the prevalence, severity, and risk factors of disability experienced by adults living with HIV, identify areas to target interventions, and optimise health and functioning.

Disability is increasingly experienced by women ageing with HIV and multimorbidity. The Episodic Disability Questionnaire (EDQ) measures the presence, severity, and episodic nature of disability across six domains. We evaluated EDQ properties among women living with HIV in the United Kingdom. Participants in the Positive Transitions Through the Menopause (PRIME) study completed the EDQ at two timepoints (1 week apart), criterion measures (WHODAS 2.0, EQ-5D-5L, Work and Social Adjustment Scale), and a demographic questionnaire. We evaluated internal consistency, test-retest reliability, measurement precision (Minimum Detectable Change (MDC) 95%), and construct validity. We assessed disability prevalence using WHODAS 2.0 (moderate threshold) and Equality Act Disability Definition (severe threshold). Of 104 participants (median age 56 years, 65% Black ethnicity), 93 (89%) completed the EDQ twice. Median duration since HIV diagnosis was 23 years; 98% had undetectable viral loads and 86% reported multimorbidity. Cronbach's alpha ranged from 0.83 (social domain) to 0.92 (daily activities domain). ICC ranged from 0.70 (physical domain) to 0.91 (daily activities domain). Precision varied, highest in daily activities (MDC95%: 6.10) and lowest in mental-emotional domains (MDC95%: 11.52). The EDQ met 80% (n = 47/59) of construct validity hypotheses. Disability prevalence was 79.81% (95%CI 70.57, 86.79) moderate and 41.75% (32.24, 51.88) severe. The EDQ possesses internal consistency, test-retest reliability, and construct validity with varied precision among women living with HIV. Disability prevalence in this sample was higher than in the general population. The EDQ offers value for research, clinical practice, and national policy by enabling measurement and description of disability, supporting intervention evaluation, and informing priority-setting and healthcare service planning for women living with HIV in the UK.

Background Understanding of Long COVID has advanced through patient-led initiatives. However, research about barriers to accessing Long COVID services is limited. This study aimed to better understand the need for, access to, and quality of, Long COVID services. We explored health needs and experiences of services, including ability of services to address needs. Methods Our study was informed by the Levesque et al.’s (2013) “conceptual framework of access to health care.” We used Interpretive Description, a qualitative approach partly aimed at informing clinical decisions. We recruited participants across five settings. Participants engaged in one-time, semi-structured, virtual interviews. Interviews were transcribed verbatim. We used reflexive thematic analysis. Best practice to ensure methodological rigour was employed. Results Three key themes were generated from 56 interviews. The first theme illustrated the rollercoaster-like nature of participants’ Long COVID symptoms and the resulting impact on function and health. The second theme highlighted participants’ attempts to access Long COVID services. Guidance received from healthcare professionals and self-advocacy impacted initial access. When navigating Long COVID services within the broader system, participants encountered barriers to access around stigma; appointment logistics; testing and ‘normal’ results; and financial precarity and affordability of services. The third theme illuminated common factors participants liked and disliked about Long COVID services. We framed each sub-theme as the key lesson (stemming from all likes and dislikes) that, if acted upon, the health system can use to improve the quality of Long COVID services. This provides tangible ways to improve the system based directly on what we heard from participants. Conclusion With Long COVID services continuously evolving, our findings can inform decision makers within the health system to better understand the lived experiences of Long COVID and tailor services and policies appropriately.

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.

To evaluate the psychometric properties of the HIV Disability Questionnaire (HDQ) among people living with HIV (PLHIV) in London, United Kingdom (UK). This is a cross-sectional measurement study. We recruited and administered the self-reported HDQ, seven criterion measures, and a demographic questionnaire with adults living with HIV accessing HIV care. We determined median and interquartile ranges (IQR) for disability presence, severity and episodic scores (range 0-100). We calculated Cronbach's alpha (α) Kuder-Richardson-20 (KR-20) statistics for disability and episodic scores respectively (internal consistency reliability), smallest detectable change (SDC) for each HDQ severity item and domain (precision), and tested 36 a priori hypotheses assessing correlations between HDQ and criterion scores (construct validity). Of N = 243 participants, all were male, median age 40 years, 94% currently taking antiretroviral therapy, and 22% living with ≥2 concurrent health conditions. Median HDQ domain scores ranged from 0 (IQR: 0,7) (difficulties with day-to-day activities domain) to 27 (IQR: 14, 41) (uncertainty domain). Cronbach's alpha for the HDQ severity scale ranged from 0.85 (95% Confidence Interval (CI): 0.80-0.90) in the cognitive domain to 0.93 (95%CI: 0.91-0.94) in the mental-emotional domain. The KR-20 statistic for the HDQ episodic scale ranged from 0.74 (95%CI: 0.66-0.83) in the cognitive domain to 0.91 (95%CI: 0.89-0.94) in the uncertainty domain. SDC ranged from 7.3-15.0 points on the HDQ severity scale for difficulties with day-to-day activities and cognitive symptoms domains, respectively. The majority of the construct validity hypotheses (n = 30/36, 83%) were confirmed. The HDQ possesses internal consistency reliability and construct validity with varied precision when administered to males living with HIV in London, UK. Clinicians and researchers may use the HDQ to measure the nature and extent of disability experienced by PLHIV in the UK, and to inform HIV service provision to address the health-related challenges among PLHIV.

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.

IntroductionAs the prevalence of Long COVID increases, there is a critical need for a comprehensive assessment of disability. Our aims are to: (1) characterise disability experiences among people living with Long COVID in Canada, UK, USA and Ireland; and (2) develop a patient-reported outcome measure to assess the presence, severity and episodic nature of disability with Long COVID.Methods and analysisIn phase 1, we will conduct semistructured interviews with adults living with Long COVID to explore experiences of disability (dimensions, uncertainty, trajectories, influencing contextual factors) and establish an episodic disability (ED) framework in the context of Long COVID (n~10 each country). Using the conceptual framework, we will establish the Long COVID Episodic Disability Questionnaire (EDQ). In phase 2, we will examine the validity (construct, structural) and reliability (internal consistency, test–retest) of the EDQ for use in Long COVID. We will electronically administer the EDQ and four health status criterion measures with adults living with Long COVID, and readminister the EDQ 1 week later (n~170 each country). We will use Rasch analysis to refine the EDQ, and confirm structural and cross-cultural validity. We will calculate Cronbach’s alphas (internal consistency reliability), and intraclass correlation coefficients (test–retest reliability), and examine correlations for hypotheses theorising relationships between EDQ and criterion measure scores (construct validity). Using phase 2 data, we will characterise the profile of disability using structural equation modelling techniques to examine relationships between dimensions of disability and the influence of intrinsic and extrinsic contextual factors. This research involves an academic–clinical–community partnership building on foundational work in ED measurement, Long COVID and rehabilitation.Ethics and disseminationThis study was approved by the University of Toronto Research Ethics Board. Knowledge translation will occur with community collaborators in the form of presentations and publications in open access peer-reviewed journals and presentations.

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.