Dataset Information

Long COVID and episodic disability: advancing the conceptualisation, measurement and knowledge of episodic disability among people living with Long COVID - protocol for a mixed-methods study.

ABSTRACT:

Introduction

As 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 analysis

In 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 dissemination

This 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.

SUBMITTER: O'Brien KK

PROVIDER: S-EPMC8905414 | biostudies-literature | 2022 Mar

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Long COVID and episodic disability: advancing the conceptualisation, measurement and knowledge of episodic disability among people living with Long COVID - protocol for a mixed-methods study.

O'Brien Kelly K KK Brown Darren A DA Bergin Colm C Erlandson Kristine M KM Vera Jaime H JH Avery Lisa L Carusone Soo Chan SC Cheung Angela M AM Goulding Susie S Harding Richard R McCorkell Lisa L O'Hara Margaret M Robinson Larry L Thomson Catherine C Wei Hannah H St Clair-Sullivan Natalie N Torres Brittany B Bannan Ciaran C Roche Niamh N Stokes Ruth R Gayle Patriic P Solomon Patricia P

BMJ open 20220307 3

<h4>Introduction</h4>As 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.<h4>Methods and analysis</h4>In phase 1, we will conduct semistructured interviews with adults living with ...[more]

PMID: 35256450

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Project description:BackgroundThe 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.MethodsWe 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).ResultsThree 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.ConclusionsThe 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.

Project description:BackgroundIncreasing 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.MethodsWe 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.ResultsOf 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.ConclusionsThe 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.

Project description:ObjectivesOf the 6.2 million Canadians aged 15 years or older who live with disability, 61% have disabilities that are not static or continuous. These dynamic conditions are known as episodic disabilities and many disproportionately experienced by women. Chronic pain is also a common feature associated with many episodic disabilities. The purpose of this article is to explore the experience of chronic pain for women living with episodic disabilities.MethodsThis qualitative study draws on the tenets of interpretive description. Thirty women, with one or more episodic disabilities and chronic pain, participated in a semi-structured interview and answered questions about their chronic pain levels, using Von Korff et al.'s graded chronic pain scale.ResultsWomen experienced gendered treatment within the healthcare system and reported that they were frequently dismissed by their healthcare providers, most often physicians. Healthcare professionals' practices around pain assessment were another common challenge for women. Women who were able to access financial support from government disability programs were more likely to access allied health professionals. Many of the holistic strategies that women researched and used to treat chronic pain were self-enacted. While diet, exercise, and other self-care activities are general health promotion strategies for all, they were seen as essential aspects of living that helped women have control over chronic pain and modifying the course of their episodic disability.ConclusionLiving with chronic pain and an episodic disability is complex. The findings of this study present the impact that gendered treatment in the healthcare system has on women who live with an episodic disability and experience chronic pain. It is evident that the current system did not meet the needs of the women in our study and system changes could result in better experiences, more disclosure of alternative therapies, and increase women's agency in their care.

Project description:BackgroundGuided by intersectionality frameworks, researchers have documented health disparities at the intersection of multiple axes of social status and position, particularly race and ethnicity, gender, and sexual orientation. To advance from identifying to intervening in such intersectional health disparities, studies that examine the underlying mechanisms are required. Although much research demonstrates the negative health impacts of perceived discrimination along single axes, quantitative approaches to assessing the role of discrimination in generating intersectional health disparities remain in their infancy. Members of our team recently introduced the Intersectional Discrimination Index (InDI) to address this gap. The InDI comprises three measures of enacted (day-to-day and major) and anticipated discrimination. These attribution-free measures ask about experiences of mistreatment because of who you are. These measures show promise for intersectional health disparities research but require further validation across intersectional groups and languages. In addition, the proposal to remove attributions is controversial, and no direct comparison has ever been conducted.ObjectiveThis study aims to cognitively and psychometrically evaluate the InDI in English and Spanish and determine whether attributions should be included.MethodsThe study will draw on a preliminary validation data set and three original sequentially collected sources of data: qualitative cognitive interviews in English and Spanish with a sample purposively recruited across intersecting social status and position (gender, sexual orientation, race and ethnicity, socioeconomic status, age, and nativity); a Spanish quantitative survey (n=500; 250/500, 50% sexual and gender minorities); and an English quantitative survey (n=3000), with quota sampling by race and ethnicity (Black, Latino/a/x, and White), sexual or gender minority status, and gender.ResultsThe study was funded by the National Institute on Minority Health and Health Disparities in May 2021, and data collection began in July 2021.ConclusionsThe key deliverables of the study will be bilingual measures of anticipated, day-to-day, and major discrimination validated for multiple health disparity populations using qualitative, quantitative, and mixed methods.International registered report identifier (irrid)PRR1-10.2196/30987.

Project description:IntroductionSub-Saharan Africa bears the greatest burden of HIV. Concomitant mental disorders are common, necessitating the integration of mental healthcare into routine HIV care. Consequently, it is necessary to holistically evaluate the mental health of adolescents and young adults living with HIV (AYALHIV, 10-24 years old) by measuring negative and positive psychological constructs (eg, anxiety and self-acceptance, respectively). There has been a proliferation of positive psychological outcome measures, but the evidence of their psychometric robustness is fragmented. This review, therefore, seeks to (1) identify positive psychological outcomes used in AYALHIV in sub-Saharan Africa and map the constructs onto corresponding measures and (2) critically appraise the psychometrics of the identified outcomes METHODS AND ANALYSIS: This mixed review will be done in two parts. First, a scoping review will identify positive psychological outcomes and map them onto corresponding outcome measures. Subsequently, we will systematically evaluate the psychometric properties of the outcomes identified from the scoping review. Independent and blinded reviewers will search articles in PubMed, Scopus, Web of Science, Africa-Wide Information, CINAHL, PsychINFO and Google Scholar from inception through 30 September 2022. Thereafter, separate independent reviewers will screen the retrieved articles. We will apply a narrative synthesis to map the key constructs emerging from the scoping review. For the systematic review, the risk of bias across studies will be evaluated using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. The quality of the psychometric properties will be rated using the COSMIN checklist and qualitatively synthesised using the modified Grading of Recommendations Assessment, Development and Evaluation checklist.Ethics and disseminationNo ethical approvals are needed. The mixed-review outputs will collectively inform the development, implementation and evaluation of bespoke interventions for AYALHIV. Review outcomes will be disseminated in a peer-reviewed journal, on social media and through policy briefs.Prospero registrationCRD42022325172.

Project description:BackgroundEvents associated with the COVID-19 pandemic, such as physical distancing, closure of community services, postponement of health appointments, and loss of employment can lead to social isolation, financial uncertainty, and interruption of antiretroviral adherence, resulting in additional health-related challenges (disability) experienced among adults living with chronic illness such as HIV. 'Living strategies' is a concept derived from the perspective of people living with HIV, defined as behaviors, attitudes and beliefs adopted by people living with HIV to help deal with disability associated with HIV and multi-morbidity. Our aim was to describe disability among adults living with HIV and self-care living strategies used during the COVID-19 pandemic. MethodsAdults living with HIV in Toronto, Ontario, Canada, including some with pre-pandemic HIV Disability Questionnaire (HDQ) data, completed a cross-sectional web-based survey between June-August 2020. The survey included the HDQ and questions about self-care living strategy use during the pandemic. We compared disability (HDQ) scores prior to versus during the pandemic using paired t-tests. We reported the proportion of participants who engaged in various living strategies at least 'a few times a week' or 'everyday' during the pandemic. ResultsOf the 63 respondents, 84% were men, median age 57 years, and 62% lived alone. During the pandemic the greatest disability severity was in the uncertainty (median 30; Interquartile range (IQR): 16, 43) and mental-emotional (25; IQR: 14, 41) domains. Among the 51 participants with pre-pandemic data, HDQ severity scores were significantly greater (worse) during the pandemic (vs prior) in all domains. Greatest change from prior to during the pandemic was in the mental-emotional domain for presence (17.7; p<0.001), severity (11.4; p<0.001), and episodic nature (9.3; p<0.05) of disability. Most participants (>60%) reported engaging a 'few times a week' or 'everyday' in self-care strategies associated with maintaining sense of control and adopting positive attitudes and beliefs. ConclusionsPeople living with HIV reported high levels of uncertainty and mental-emotional health challenges during the pandemic. Disability increased across all HDQ dimensions, with the greatest worsening in the mental-emotional health domain. Results provide an understanding of disability and self-care strategy use during the COVID-19 pandemic.

Project description:BackgroundEvents associated with the COVID-19 pandemic, such as physical distancing, closure of community services, postponement of health appointments, and loss of employment can lead to social isolation, financial uncertainty, and interruption of antiretroviral adherence, resulting in additional health-related challenges (disability) experienced among adults living with chronic illness such as HIV. 'Living strategies' is a concept derived from the perspectives of people living with HIV, defined as behaviors, attitudes and beliefs adopted by people living with HIV to help deal with disability associated with HIV and multi-morbidity. Our aim was to describe disability among adults living with HIV and self-care living strategies used during the COVID-19 pandemic.MethodsAdults living with HIV in Toronto, Ontario, Canada, including some with pre-pandemic HIV Disability Questionnaire (HDQ) data, completed a cross-sectional web-based survey between June-August 2020. The survey included the HDQ and questions about self-care living strategy use during the pandemic. We compared disability (HDQ) scores prior to versus during the pandemic using paired t-tests. We reported the proportion of participants who engaged in various living strategies at least 'a few times a week' or 'everyday' during the pandemic.ResultsOf the 63 respondents, 84% were men, median age 57 years, and 62% lived alone. During the pandemic the greatest disability severity was in the uncertainty [median 30; Interquartile range (IQR): 16, 43] and mental-emotional (25; IQR: 14, 41) domains. Among the 51 participants with pre-pandemic data, HDQ severity scores were significantly greater (worse) during the pandemic (vs prior) in all domains. Greatest change from prior to during the pandemic was in the mental-emotional domain for presence (17.7; p < 0.001), severity (11.4; p < 0.001), and episodic nature (9.3; p < 0.05) of disability. Most participants (> 60%) reported engaging a 'few times a week' or 'everyday' in self-care strategies associated with maintaining sense of control and adopting positive attitudes and beliefs.ConclusionsPeople living with HIV reported high levels of uncertainty and mental-emotional health challenges during the pandemic. Disability increased across all HDQ dimensions, with the greatest worsening in the mental-emotional health domain. Results provide an understanding of disability and self-care strategy use during the COVID-19 pandemic.

Dataset Information

Long COVID and episodic disability: advancing the conceptualisation, measurement and knowledge of episodic disability among people living with Long COVID - protocol for a mixed-methods study.

Introduction

Methods and analysis

Ethics and dissemination

Publications

Long COVID and episodic disability: advancing the conceptualisation, measurement and knowledge of episodic disability among people living with Long COVID - protocol for a mixed-methods study.

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