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

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.

Scoping review of rehabilitation care models for post COVID-19 condition

“… 3 Convergent with prospective cohorts, between a third to three quarters of hospitalized and community patients had not recovered at 6 and 12 months and a fifth of patients described persistent functional limitations. 4 – 8 The multisystemic, fluctuating or episodic and relapsing nature of post COVID-19 condition 9 , 10 is confirmed by a systematic review of 47 910 patients. 11 …”

“None of Us Are Lying”: An Interpretive Description of the Search for Legitimacy and the Journey to Access Quality Health Services by Individuals Living with Long COVID

“…Symptoms of Long COVID were found to be highly diverse and followed an episodic or relapsing-remitting pattern. 46,47 Fluctuating symptoms had a profound impact on participants' level of functioning, disability, and health. Initial access to services was dependent on guidance from providers and/or self-advocacy efforts.…”

Conceptualising the Episodic Nature of Disability among Adults Living with Long COVID: A Qualitative Study

“…The exploration of the dimensions (or types) of health related challenges that comprise disability, the contextual factors that exacerbate or alleviate disability, and triggers of disability is a focus of future work. 24…”

“…More details on the study protocol are published elsewhere. 24 Patient and Public Involvement This study is a community-clinical-academic collaboration among the Long COVID community, clinicians, and researchers in the field of Long COVID, rehabilitation and episodic disability. 25 This study is a collaboration with Long COVID community networks and organizations including: Long COVID Physio (DAB, CT), 26 Patient-Led Research Collaborative (HW, LMcC), 27 COVID Long-Haulers Support Group Canada (SG), 28 Long Covid Support (MOH), 29 and Long COVID Ireland (NR, RS) 30 represented by persons with experiences living with Long COVID, who were involved in all stages of the research design, sampling strategy, recruitment, analysis and interpretation of study findings.…”

“…The exploration of the dimensions (or types) of health related challenges that comprise disability, the contextual factors that exacerbate or alleviate disability, and triggers of disability is a focus of future work. 24 Uncertainty and worry about the future was a key feature of disability experienced by participants, described as the inability to predict episodes, the overall trajectory of their illness, and impact on future life decisions. With Long COVID, the impact of living with the uncertainty of when an episode of more severe symptoms might arise, the severity and duration of that episode, and the long-term implications on health and life decisions, including the financial, practical, and emotional consequences are unknown.…”