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

Abstract

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 rehabilitation

• Persons 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.

Keywords:

• Rehabilitation
• COVID-19
• Long COVID
• Post-COVID condition
• disability
• rehabilitation policy
• person- and family-centered care
• research priorities

Introduction

Globally, an estimated 770 million individuals have experienced acute COVID-19 [1]. In Canada, there have been over 4.6 million confirmed cases of COVID-19 and over 54,498 deaths as of October 24, 2023 [2]. In Canada, the average cost per COVID-19 hospital admission was $24,000 CAD, approximately 3 times greater than the cost of an average hospital admission [3]. Approximately 17-30% of people with a confirmed diagnosis of COVID-19 experience long-term symptoms with the most common fatigue, post-exertional malaise (PEM), respiratory issues, cognitive dysfunction, and general weakness [4,5]. The terms Long COVID or Post-COVID Condition (PCC) or Post-acute sequelae of SARS-CoV2 (PASC) have been used to describe when these symptoms are experienced for a persistent and prolonged period, 12 weeks after the acute infectious period and lasting for at least two months [6,7].

An estimated 144 million individuals are living with Long COVID globally [8–11]. A systematic review involving 50 studies indicated a pooled prevalence of 43% of persons living with Long COVID globally, with 53% among hospitalized, and 34% among non-hospitalized patients [12]. Systematic review evidence examining symptoms among individuals after COVID-19 reported that 38-72% lived with ≥1 symptom for at least two months from COVID-19 onset and up to 54% lived with persistent symptoms for six or more months [13–17]. Among the estimated 1.9 million (2.9%) people living with Long COVID in the UK, 79% reported their symptoms negatively impacted their daily activities [11]. Weakness or tiredness was the most commonly reported symptom (60%), followed by shortness of breath (48%), muscle ache (42%), difficulty concentrating (37%), and joint pain (34%) [18]. Post-exertional malaise (PEM) or post-exertional symptom exacerbation (PESE), defined as the worsening or relapse of symptoms following exertion, such as physical or cognitive activity [18–21] is a hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). PEM is also experienced by persons living with Long COVID [20–24], whereby an estimated half of persons with Long COVID fulfill ME/CFS criteria [22] further highlighting the health challenges experienced among the population.

Collectively, the health-related consequences of COVID-19 and Long COVID may be referred to as “disability”, broadly defined as any physical, cognitive, mental and emotional health challenges, activity limitations, uncertainty about the future, and challenges to social participation [23]. Disability among persons with COVID-19 and Long COVID can be experienced as dynamic and episodic in nature, characterized by relapsing or remitting fluctuations in the presence and severity of health-related challenges over time [24–27]. The multi-dimensional and potentially episodic nature of disability experienced by people living with COVID-19 and Long COVID, can adversely impact daily function, return to employment, family life, relationships, and ability to care for others [20,28–30]. Caregivers are essential to the health and wellbeing of persons living with COVID-19 and Long COVID [31–33]. The context of the COVID-19 pandemic, including public health measures, decreased support from formal care providers, and the possibility of contracting COVID-19, further increased demands on caregivers of persons living with COVID-19 and Long COVID [31–33].

Rehabilitation, broadly defined as interventions targeted to address impairments or contextual factors to improve functional capacity [34], has a role in preventing and addressing disability, and enhancing and maintaining health outcomes across the continuum of care (e.g., hospitals, rehabilitation centres, and community clinics) among persons with COVID-19, Long COVID and their caregivers [33,35,36]. Evidence including guidelines on COVID-19 and Long COVID rehabilitation is emerging at a rapid rate [37–39]. The response among people with Long COVID and other post-infectious illnesses to the COVID-19 pandemic has been instrumental in setting and building on foundational research in areas of other post-infectious conditions, to inform education and increase the safety of COVID rehabilitation [40]. However, further research is required to enhance understanding of safe rehabilitation of post-infectious and complex chronic conditions, such as Long COVID, and knowledge translation should be targeted to increase the capacity of rehabilitation professionals (including physiotherapists, occupational therapists, and speech-language pathologists) to deliver care to this population [41]. Developing a robust community-engaged research agenda involving disability and rehabilitation is essential to inform a coordinated response and evidence to support; appropriate, safe, timely and effective rehabilitation strategies, interventions and interprofessional models of care in the context of COVID rehabilitation.

The Rehabilitation Science Research Network for COVID (the Network) was established in the Temerty Faculty of Medicine at the University of Toronto in 2022 to advance evidence in the field of rehabilitation to optimize assessments, interventions and models of care delivery to prevent or mitigate disability and optimize health and well-being among persons with COVID-19, Long COVID, and their caregivers [42]. The Network is guided by an international Advisory Committee (AC), comprised of ∼25 persons with lived experiences, clinicians, researchers, trainees, and policy representatives across the rehabilitation continuum of care [43]. The AC guides the strategic directions of the Network, which are to establish partnerships and collaborations while identifying emerging issues and priorities to advance evidence in the field. Hence, we aimed to identify research priorities in COVID rehabilitation from the perspectives of people with lived experiences, their caregivers, clinicians, researchers, representatives from community organizations and policy representatives.

Materials and Methods

The Network conducted a series of key informant consultations with people with lived experiences, researchers, clinicians, and representatives from community organizations with an interest in COVID and Long COVID rehabilitation. Our approach was informed by past experiences identifying research priorities in rehabilitation among persons living with chronic and episodic conditions [44,45]. We conducted five distinct consultations from June 2022 to April 2023 with the following key informants: (1) AC Members of the Network; (2) Attendees at a symposium focused on COVID rehabilitation research collaboration at the 2022 American Congress of Rehabilitation Medicine (ACRM) conference in Chicago, Illinois; (3) Attendees at a presentation on the Network at the Rehabilitation Sciences Institute Leadership Rehab Rounds, University of Toronto; (4) Members of the Network; and (5) Registrants of the International Forum on COVID Rehabilitation Research. We asked about demographic and personal characteristics using a self-administered, web-based questionnaire with members of the Rehabilitation Science Research Network for COVID and registrants of the International Forum (Supplementary file 1).

We used a combination of data collection methods and sources to gather perspectives on research priorities that included: web-based questionnaires asking key informants new and emerging issues and research priorities in COVID, Long COVID, disability and rehabilitation; large group facilitated discussion, and an environmental scan of research presented on COVID and rehabilitation at the ACRM [46]. Specifically, in the web-based questionnaires, we asked the following two questions: “In your opinion, what are 2 new and emerging issues in the field of acute COVID or Long COVID, disability and rehabilitation?”; and 2) “In your opinion, what are 2–3 key research priorities in the area of acute COVID or Long COVID, disability and rehabilitation that are essential for moving the field forward?” In the large group facilitated discussions, we dedicated time across consultations to interactive discussions regarding research priorities in the field of COVID rehabilitation. In the environmental scan, we documented research priorities articulated and addressed by the poster and oral presentations and took detailed notes at the oral presentations at the ACRM conference. See Table 1 for a detailed description of the characteristics of each consultation, key informant group, and data sources.

Table 1. Key informant consultations & data sources to establish research priorities in COVID rehabilitation.

Consultation (Month, Year)	Context of consultation	Key Informant Group(s)	Data Collection Method and Source(s)
Rehabilitation Science Research Network for COVID Advisory Committee Meeting (October, 2022)	Web-based RSVP process for the meeting.	Advisory Committee Members that included persons with lived experiences, researchers, rehabilitation professional clinicians, and other health care providers, from Canada, the United Kingdom, and the United States; and ex-officio members from the Rehabilitation Sciences Sector at the University of Toronto.	Web-based Questionnaire: Prior to the advisory committee meeting, members were asked to complete a web-based questionnaire with the following questions: “In your opinion, what are 2 new and emerging issues in the field of acute COVID or Long COVID, disability and rehabilitation?”; and 2) “In your opinion, what are 2-3 key research priorities in the area of acute COVID or Long COVID, disability and rehabilitation that are essential for moving the field forward?”
	Hybrid (in-person and online) meeting.		Large Group Facilitated Discussion: We dedicated 25 min to review responses to the above questions and to discuss research priorities in the field of COVID rehabilitation. We (KKO, JC, KMD) documented notes from the discussion to highlight emerging issues and priorities in the field.
American Congress of Rehabilitation Medicine (ACRM) Conference (November, 2022)	Symposium presentation entitled ‘Opportunities for International Collaboration and Capacity Building in Long COVID and COVID-19 Rehabilitation Research’ followed by Q and A.^1	Persons with lived experiences, researchers, rehabilitation clinicians, other health care providers who attended the symposium.	Large Group Facilitated Discussion: We dedicated 20 min of the symposium presentation to an interactive discussion regarding research priorities in the field of COVID rehabilitation. We (KKO, JC, KMD) documented notes from the discussion to highlight emerging issues and priorities in the field.
	Abstracts presented in the COVID-19 track of the conference.	Poster and oral presentations as part of the “COVID Track” of ACRM 2022 considered relevant to research in COVID and rehabilitation.	Environmental Scan of Evidence: KMD documented research priorities articulated and addressed by the poster and oral presentations included in the COVID-19 track of the conference. KMD also took detailed notes at the presentations attended in-person. The environmental scan supported the four other consultations and was given less weight relative to the direct consultations on COVID rehabilitation research priorities.
Rehabilitation Sciences Institute (RSI), Leadership Rehab Rounds, University of Toronto (November, 2022)	Presentation of an overview of the Network structure, vision, values, strategic objectives, and actions of the Network followed by Q and A.	Researchers, rehabilitation professional clinicians, and other health care providers who attended the session.	Large Group Facilitated Discussion: We dedicated approximately 20 min to an interactive discussion regarding research priorities in the field of COVID rehabilitation. We (KMD, KKO, JC) took notes on the discussion and compiled a summary of research priorities which emerged through this consultation.
Rehabilitation Science Research Network for COVID Membership Intake Survey (November, 2022 – April, 2023)	Web-based membership intake survey questionnaire.	Persons with lived experiences, researchers, rehabilitation professional clinicians, and other health care providers internationally who completed the membership intake survey questionnaire.	Web-based Questionnaire: Individuals were asked to complete a web-based intake survey questionnaire as part of the membership intake process with the following questions: “In your opinion, what are 2 new and emerging issues in the field of acute COVID or Long COVID, disability and rehabilitation?”; and 2) “In your opinion, what are 2-3 key research priorities in the area of acute COVID or Long COVID, disability and rehabilitation that are essential for moving the field forward?”
International Forum on COVID Rehabilitation Research^2 (April, 2023)	Web-based registration for the Forum.	Persons with lived experiences, researchers, rehabilitation professional clinicians, and other health care providers who registered for the Forum.	Web-based Questionnaire: Individuals were asked to complete a web-based questionnaire as part of the registration process with the following questions: “In your opinion, what are 2 new and emerging issues in the field of acute COVID or Long COVID, disability and rehabilitation?”; and 2) “In your opinion, what are 2-3 key research priorities in the area of acute COVID or Long COVID, disability and rehabilitation that are essential for moving the field forward?”
	Hybrid (in-person and online) Forum.	Persons with lived experiences, researchers, rehabilitation professional clinicians, and other health care providers who attended the Forum.	Large Group Facilitated Discussion: Throughout the course of the Forum and after each presentation we asked attendees to identify COVID rehabilitation research priorities and emerging issues in the field of COVID rehabilitation. Rapporteurs of the Forum took notes on the discussion.

¹The Network’s Co-Director’s presented a Symposium, “Opportunities for International Collaboration and Capacity Building in Long COVID and COVID-19 Rehabilitation Research,” at the 2022 ACRM conference in Chicago on November 11, 2022. The symposium summarized ongoing research exploring the potentially episodic nature of disability experienced by people with Long COVID, reviewed 3 existing Networks in the field of acute COVID and Long COVID rehabilitation research, and discussed the need for ongoing collaborations and partnerships among rehabilitation professionals, clinicians, and community members with an interest in rehabilitation science research in COVID-19.

²The Rehabilitation Science Research Network for COVID hosted the inaugural International Forum on COVID Rehabilitation Research on Friday April 21, 2023 at the Rehabilitation Sciences Building, University of Toronto. The one-day in-person Forum was organized into a Keynote Speaker Session, two Research Evidence Sessions and a Panel Session. Twenty-one speakers were invited to present on research, clinical and community practice related to COVID rehabilitation research.

We reviewed the need for ethics approval with the University of Toronto Health Services Research Ethics Board, who confirmed that given the consultative process involving the membership intake survey, meetings, and Forum, this consultation did not require ethics approval.

Data analysis

Three team members (KKO, KMD, JC) reviewed the responses and discussion notes collated from the data sources from the above consultations. We analyzed the data using content analytical techniques [47]. We developed a list of priority areas for COVID rehabilitation research organized into the Framework of Research Priorities in COVID Rehabilitation. The core analytical team (KKO, JC, KMD) met four times to discuss the content analysis findings and refine the Framework. We presented a preliminary draft of the Framework to the AC of the Rehabilitation Science Research Network for COVID along with the original data sources across the five consultations in April 2023 for review. We then refined the Framework to establish the current Framework of research priorities.

Results

Summary of consultations

We conducted five consultations on COVID rehabilitation research priorities with approximately 450 key informants with an interest in COVID rehabilitation research in 22 countries, spanning seven continents.

Rehabilitation Science Research Network for COVID Advisory Committee

Seventeen AC members completed a web-based survey questionnaire about new and emerging issues and research priorities in advance of the first AC meeting (October 2022). Fifteen AC members also attended the AC meeting, including persons with lived experiences with Long COVID and their caregivers (33%; n = 5), members from Temerty Faculty of Medicine including the Rehabilitation Sciences Sector and Rehabilitation Sciences Institute (33%; n = 5), clinicians and researchers with expertise in COVID rehabilitation (27%; n = 4), and one representative from a community health service organization (7%; n = 1). Most AC members who attended the meeting were from Canada (86%; n = 13).

American Congress of Rehabilitation Medicine (ACRM) conference symposium attendees

Thirteen key informants attended the ACRM symposium from Canada, Germany, the United Kingdom, and the United States. Attendees included people with Long COVID, rehabilitation clinicians (physiotherapists, speech-language pathologists), other healthcare providers (physiatrists, neuropsychologists), researchers, and trainees interested in COVID rehabilitation. Of the 30 posters and 30 oral presentations reviewed in the COVID-19 track of the conference, 25 (83%) posters and 17 (57%) oral presentations considered most relevant to the Network scope of COVID rehabilitation were included in the environmental scan.

Leadership rehab rounds, rehabilitation sciences sector, University of Toronto attendees

Seventy individuals attended the Leadership Rehab Rounds including faculty, staff, and trainees in the Rehabilitation Sciences Sector at the University of Toronto; clinicians, trainees, and researchers from affiliated clinical sites; and people living with Long COVID.

Rehabilitation Science Research Network for COVID membership

As of April 30, 2023, there were 60 responses to the Network’s membership intake survey. Of the 60 members, 9 (15%) had lived experiences with Long COVID, 12 (20%) had lived experiences with acute COVID-19, and 17 (28%) had lived experiences as a caregiver for someone with acute COVID-19 and/or Long COVID. See Table 2 for characteristics of the members of the Network.

Table 2. Characteristics of members of the rehabilitation science research network for COVID and registrants for the International forum on COVID rehabilitation research.

Characteristic	Members of the Rehabilitation Science Research Network for COVID* n (%) n = 60	Registrants of the International Forum on COVID Rehabilitation Research n (%) n = 297
Country
Canada	44 (73%)	201 (81%)
United Kingdom	4 (7%)	37 (13%)
United States of America	4 (7%)	26 (9%)
Other^1	8 (13%)	31 (10%)
Missing		2 (<1%)
Health Care Provider	44 (73%)	102 (36%)
Type of Health Care Provider (n = 44; 102)
Physiotherapist	20 (45%)	59 (59%)
Occupational Therapist	12 (27%)	19 (19%)
Physician	2 (5%)	10 (10%)
Other^2	10 (23%)	12 (12%)

*Represents characteristics of members of the Rehabilitation Science Research Network for COVID as of April 30, 2023.

¹Other countries included: Australia, Brazil, Chile, Germany, Greece, Hong Kong, Ireland, Italy, Japan, Jordan, Mauritius, New Zealand, Pakistan, Qatar, Saint Lucia, South Korea, and Switzerland.

²Other types of health care providers included: Kinesiologist, Nurse, Nurse Practitioner, Recreational Therapist, Pharmacist, Speech-Language Pathologist, Radiographer, Manager, Knowledge Broker, Clinical Exercise Physiologist, Wellness Coach, University Administrator, Health Care Administrator, Community Health Navigator, Health System Influencer/Decision Maker, Case Manager, Equity Analyst, Policy Analyst, Retiree, Epidemiologist, or blended roles.

International Forum on COVID Rehabilitation Research registrants & attendees

There were 297 registrants for the International Forum on COVID Rehabilitation Research. Of the 297 registrants, 291 (98%) responded to questions about their lived experiences with acute COVID, Long COVID, and as a caregiver to people with acute COVID and/or Long COVID. There were 59 (20%) registrants with lived experiences of Long COVID, 41 (14%) with lived experiences with acute COVID, and 32 (11%) with lived experiences as a caregiver for someone with acute COVID and/or Long COVID. See Table 2 for characteristics of Forum registrants. A total of 160 people attended the Forum (125 online; 35 in-person) from 16 countries, spanning 5 continents.

Framework of Research Priorities in COVID rehabilitation

Synthesis across all data sources provided insight into the “who” (target populations), the “how” (methodological considerations), the “what” (research priorities), and the “impact” (knowledge mobilization) of COVID rehabilitation research. We collated this information to develop the Framework of Research Priorities in COVID Rehabilitation, which includes five research priorities that span health and disability across COVID illness trajectories from acute COVID-19 to Long COVID; and the rehabilitation care continuum from acute to community care. Research priorities (the “what”) include: (1) understanding experiences of episodic disability; (2) assessing episodic disability; (3) identifying and evaluating 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 of interest (the “who”), methodological considerations to address the priorities (the “how”), and the importance of knowledge mobilization (the “impact”) in advancing scientific evidence, clinical education and practice, and COVID rehabilitation policy (Figure 1). See Supplementary file 2 for the full dataset of sources across the consultations.

Figure 1. Framework of research priorities in COVID rehabilitation.

In the Framework, the priorities in COVID-19 and Long COVID Rehabilitation are clustered and overlap within and between the two broader priority content areas: (a) health and disability across illness trajectories; and (b) rehabilitation across care continuums. Specific to these conditions, illness trajectories may span from initial COVID infection onward, with Long COVID included at the other end of one illness trajectory. Applicable care continuums encompass points of care that individuals with COVID-19 or Long COVID may access for rehabilitation services, such as primary care, hospitals, rehabilitation hospitals, virtual rehabilitation programs, or community clinics. Additionally, the Framework includes target populations (persons with lived experiences of acute COVID-19, Long COVID and other concurrent conditions across the lifespan; parents, children, partners, and caregivers; rehabilitation and other health providers), and methodological considerations (community-engaged, interdisciplinary, and diversity of approaches while incorporating principles of health justice) for addressing the research priorities. The Framework highlights the importance of knowledge mobilization to transfer and exchange research evidence into future practice, programs, education and policy (Figure 1). The Framework is intended to serve as a knowledge mobilization tool that may be used by researchers, clinicians, trainees, and members of the community to inform future COVID rehabilitation research.

We discuss the five research priorities followed by the target population, methodological considerations and knowledge mobilization components of the framework.

What: Research priorities

Health and disability across COVID-19 and Long COVID illness trajectories

We identified two specific research priorities: (1) understanding experiences of episodic disability; and (2) assessing episodic disability. Understanding experiences of episodic disability may include exploring the physical, cognitive, and mental-emotional health, day-to-day function, social inclusion (including employment, return to work, personal relationships, and social and recreational activities), and uncertainty experienced by individuals living with COVID-19 and Long COVID and/or their parents, children, partners, and caregivers. Assessing episodic disability may include developing and evaluating diagnostic tests and screening tools to inform safe approaches to rehabilitation (e.g., screening for PESE). It may also include developing and evaluating safe performance-based and patient-reported outcome measures to assess the potentially episodic nature of disability experienced by people with COVID and Long COVID.

Rehabilitation across COVID-19 and Long COVID care continuums

We determined three specific research priorities: (1) identifying and examining safe approaches to rehabilitation; (2) examining the role, implementation, and impact of models of rehabilitation care; and (3) examining access to safe, timely and appropriate rehabilitation and other health care provider services. Key informants identified the importance of developing, implementing, and evaluating safe approaches to rehabilitation for people with COVID-19, Long COVID, and their parents, partners, and caregivers. Examples of safe approaches to rehabilitation identified by key informants as requiring further research included: symptom titrated approaches to assessment and treatment for persons experiencing PEM/PESE; pacing and self-management approaches; and interventions to support and prepare parents, children, partners, and caregivers of persons with COVID-19 or Long COVID. These interventions may include education involving instruction, interventions or programs involving strategies for balancing activity and rest, specifically modifying physical and cognitive activities to prevent PEM/PESE. Key informants also expressed that it was important to develop, implement and evaluate a range of models of rehabilitation care for COVID and Long COVID (in-person, online, individual, and group-based). They stated that health and disability outcomes should be examined when evaluating models of rehabilitation care in acute, rehabilitation, and community settings. Key informants also identified the importance of examining barriers and facilitators to timely access to safe rehabilitation, such as funding, health human resources, and consideration of referral pathways. This priority may also include exploring the knowledge, experiences and understanding of COVID and Long COVID among rehabilitation providers and other healthcare providers, in order to develop and optimize safe approaches and interventions.

Who: Target populations

The Framework includes three target populations to consider in COVID rehabilitation research: (1) persons with lived experiences of COVID-19, Long COVID and other concurrent conditions across the lifespan; (2) parents, children, partners, and caregivers of people with COVID-19 or Long COVID; and (3) rehabilitation and other health care providers working with these populations.

Key informants emphasized that COVID rehabilitation research should include persons of all ages across the lifespan living with COVID-19 and Long COVID. Many identified a paucity of COVID rehabilitation research specific to pediatric and older populations at this time. Additionally, they emphasized the importance of considering concurrent conditions (e.g., ME/CFS, Postural Orthostatic Tachycardia Syndrome (POTS), dementia, pre-existing disabilities) related to COVID rehabilitation research.

See Table 3 for examples of research questions that illustrate how each of the two priority content areas of research may apply to each target population.

Table 3. Examples of research questions by priority area of research and target population within the Framework of research priorities in COVID rehabilitation.

Target Population	Priority Area: Health and Disability across COVID and Long COVID Illness Trajectories Example resaerch questions	Priority Area: Rehabilitation across COVID and Long COVID Care Continuums Example resaerch questions
Persons with lived experiences of acute COVID-19, Long COVID, and other concurrent conditions across the lifespan	What performance-based outcome measures and patient-reported outcome measures should be included as a core-outcome measure set for people recovering from acute COVID-19 in an inpatient rehabilitation program?	In critically ill patients with COVID-19, what is the impact of ICU-based rehabilitation interventions on functional outcomes?
	What are the cognitive health challenges experienced by persons living with Long COVID?	How does an individualized rehabilitation program focused on symptom-titrated activity, pacing, and education on self-management strategies impact the presence, severity, and temporal nature of Post-Exertional Malaise experienced by individuals with Long COVID?
Parents, children, partners, and caregivers of persons with COVID and Long COVID	What are the experiences of parents, children, partners, and caregivers of people with Long COVID with uncertainty and planning for the future?	How can technology and virtual care be used to support the health and well-being of parents, children, partners, and caregivers of individuals who are acutely ill with COVID-19, requiring hospitalization?
Rehabilitation and other health care providers working with people with COVID, and Long COVID	What are the knowledge and experiences of rehabilitaiton and other health care providers working with patients with COVID-19 and patients living with Long COVID?	How can health-human resources within rehabilitation and other health care professions be optimized to enable timely access to safe rehabilitation for people with Long COVID?

How: Methodological considerations

Key informants recommended adopting meaningful patient- and community-engaged approaches (including caregivers) at all stages of research, across conceptualization, implementation, and knowledge translation. Collaborative engagement is essential to enhance the relevance and timeliness of research questions to the community. Patient- and community-engaged research can help to raise public awareness about the roles of safe rehabilitation in managing COVID-19 and Long COVID and to promote the integration of rehabilitation into practice.

Key informants also recommended incorporating health justice, epistemic justice, equity, diversity, and inclusion principles into COVID rehabilitation research as social determinants of health, ableism, racism, sexism, transphobia, and other systemic forms of oppression have resulted in inequitable access to care and the exclusion of more marginalized groups and people with lower socioeconomic status from research among individuals with COVID-19, Long COVID, and their parents, children, partners, or caregivers [48].

Key informants recommended that COVID rehabilitation research include diverse methodological approaches (quantitative, qualitative, mixed-methods, co-design) as they may apply to a given research question. Efforts should be made to engage community and inter-professional collaborations; to help capture diverse and unique perspectives and expertise in COVID rehabilitation research. Researchers should consider international research collaborations involving countries where people living with COVID and Long COVID may share similar experiences related to disability and rehabilitation. Finally, COVID rehabilitation research should build on foundational knowledge, lessons learned, and resources from those with lived experiences and past post-infectious research.

Impact: Knowledge mobilization

As knowledge transfer and exchange is a key strategic direction of the Rehabilitation Science Research Network for COVID, key informants highlighted the need for COVID rehabilitation research to emphasize the needs of the community and clinical practice and ensure that research evidence is translated to appropriate clinicians, health providers, educators, and health authorities to advance education, programs, and policy. Knowledge transfer and exchange should be targeted to key populations that include (but are not limited to) people with lived experiences, clinicians, healthcare professional educators, health authorities and ministries, insurers and workers’ compensation boards.

Discussion

The aim of this work was to outline the key research priorities for rehabilitation in the context of COVID-19 and Long COVID. The Framework of Research Priorities in COVID Rehabilitation reflects the perspectives of an international group of persons with lived experiences, researchers, clinicians, representatives from community-based organizations, funders and policy representatives with an interest in COVID and rehabilitation across five consultations. This framework includes focal research areas, targeted research populations, methodological considerations to enhance research, and specific knowledge translation and exchange priorities including clinical education, clinical practice, policy, and future research.

The research priorities in the Framework outline the need for a comprehensive approach to address disability and rehabilitation across COVID illness trajectories and the broad continuums of rehabilitation care. Since the priorities are overlapping constructs, they are not mutually exclusive and should not be addressed in isolation. Rather, the priorities are meant to provide a coordinated and collaborative approach to advancing evidence in the field of COVID-19 and Long COVID disability and rehabilitation. The Framework aligns with the Canadian Task Force for Post-COVID Condition recommendations (March 2023) that outline the importance of standardizing assessments, providing timely and equitable access to person-centered care, and advancing research priority areas in the development of treatment approaches to maximize function and participation of persons living with Long COVID [49]. Furthermore, some of these research priorities align with priorities established in post-infectious conditions (ME/CFS) [50], and other chronic and episodic conditions [44,45,51]. However, the priorities in this Framework are distinct from other research priorities, given they specifically consider priorities for COVID-19 and Long COVID rehabilitation.

Rehabilitation should be safe, disability-focused, goal-oriented, person-centered, focused on function, and tailored to an individual’s goals, abilities, and interests [41]. Rehabilitation is not limited to cardiorespiratory approaches, exercise or physical activity. Exercise can be harmful to persons with PEM or PESE; specifically, graded exercise therapy is not a safe rehabilitation intervention to treat fatigue among people experiencing PEM or PESE [52–54]. Rehabilitation should be person-centered and may include strategies such as self-management, pacing, and accommodation to support return to work [41,55–57]. Rehabilitation should consider pre-existing health conditions that persons may be living with prior to COVID-19 or Long COVID, such as cardiovascular disease, cancer, diabetes, and chronic pain to ensure meaningful and relevant goal setting and approaches to care [58,59]. There is a need to consider a coordinated research response in rehabilitation, between people with lived experiences, clinicians, and researchers, to address disability, optimize safe and effective rehabilitation approaches to care and treatment, and highlight best practices in the field. Opportunities exist to build on successful disability and rehabilitation models from other chronic and episodic illnesses, in the context of COVID rehabilitation research [26,60]. Access to timely, safe, effective, and accessible rehabilitation is a critical area in need of development and highlights the opportunities and importance of partnering with other chronic conditions to foster a “strength in numbers approach” with other chronic and episodic illnesses to advance policy and programming related to COVID rehabilitation such as ME/CFS [61,62].

The Framework of Research Priorities on COVID Rehabilitation is intended to be used as a knowledge mobilization tool and may be used by researchers, clinicians, trainees, and members of the community to inform future COVID rehabilitation research. This Framework can also be used to help individuals prioritize clinical and research efforts or to help guide decisions on funding research in the field.

Community and patient-led and engaged approaches to COVID rehabilitation research are essential to foster timely, meaningful and relevant approaches to rehabilitation research and its application of research evidence about appropriate service planning and delivery. Patient engagement should involve the integration of patient or community partners at all phases of the research process, including conceptualization, implementation, knowledge translation, and shared decision-making between community and research partners. The Patient-Led Research Collaborative (PLRC) score cards provide a foundation for the community and researchers to collaboratively work together to address the priorities and guide the process of a patient group and research partner collaborations [63]. Fostering engagement and connecting clinicians and community members with researchers is critical for moving the field forward. International partnerships and collaborations fostered in other health conditions provide a strong foundation from which to establish a coordinated, relevant and meaningful approach for advancing rehabilitation for people living with COVID and Long COVID. Experiences with COVID and Long COVID, access to services, and experiences with rehabilitation vary across regions (countries, urban vs. rural or remote), sex, gender, and race [64–67]. Therefore, it is important for research across all priority areas to incorporate principles of equity, diversity, inclusion, accessibility, and health justice. Forming partnerships and exchanging knowledge with other informants where individuals experience similar challenges related to COVID disability and rehabilitation is essential to address research priorities in this emerging field.

Our consultations, including persons with lived experiences, researchers, clinicians, trainees and community organization representatives, were a strength in developing the Framework. The Framework was co-constructed with the Advisory Committee and builds on a conceptual framework of episodic disability that considers the multi-dimensional nature of health-related challenges experienced among persons with Long COVID [27]. We embedded this consultation within existing meetings, membership surveys, and knowledge translation events to broaden the international scope of the consultation. Nevertheless, we did not use a formal Delphi or nominal group technique to identify the priorities, nor did we capture the characteristics of key informants in detail across the consultation sessions. Demographic characteristics were limited to Forum registrants and Network members as as we did not formally survey the characteristics of attendees at the conference or rounds presentations. While our consultation was international in scope, our sources were limited primarily to perspectives within high-income countries, which limits the transferability of the priorities to low and middle-income countries. The disparities of Long COVID across different sex, racial, and ethnic groups [68], as well as differences in Long COVID awareness and research within low-income settings [69,70], highlight the need to consider the applicability of the Framework in broader socio-demographic contexts. Although these priorities are meant to be aligned with a rehabilitation lens, addressing them will require collaborative and interprofessional community-engaged approaches involving COVID-19, Long COVID, primary care, and other teams of healthcare providers in collaboration with rehabilitation. Key informants involved in the consultation are involved in numerous research and community-led initiatives to address the impact of living with COVID-19 and Long COVID. Finally, we acknowledge that the field is continually evolving, and new priorities will emerge as more evidence in COVID-19 and Long COVID evolves; hence, this is a living Framework whereby research priorities will continue to evolve with new and emerging priorities as identified by the community.

Conclusion

This Framework of Research Priorities in COVID Rehabilitation provides a foundation for international and multidisciplinary collaborations to advance COVID-19 and Long COVID disability and rehabilitation research to promote the health and well-being of persons with COVID-19, Long COVID, and their caregivers. The Framework may be used by researchers, clinicians, trainees, and members of the community to inform future COVID rehabilitation research.

Acknowledgments

We thank the following for their contributions to this manuscript [*indicates Advisory Committee Member of the Rehabilitation Science Research Network for COVID]: *Darren A. Brown (Chelsea and Westminster NHS Foundation Trust), Simon Décary (University of Sherbrooke), *Jessica DeMars (Breathewell Physio), *Mary Forhan (Department of Occupational Science and Occupational Therapy, University of Toronto), *Patricia Houston (Temerty Faculty of Medicine, University of Toronto), Fiona Jones (Population Health Research Institute, St. George’s University of London), *Pascal van Lieshout (Department of Speech-Language Pathology, University of Toronto), *Nisa Malli (Patient-Led Research Collaborative), *Rosemary Martino (Department of Speech-Language Pathology, University of Toronto), Alyssa Minor (Long COVID Physio), *Elizabeth Racz (Realize), and additional members of the Advisory Committee of the Rehabilitation Science Research Network for COVID. We thank the individuals who were involved in identifying the research priorities in COVID rehabilitation. We thank members of the Rehabilitation Science Research Network for COVID Advisory Committee for the refinement of the Framework. We thank Laura Bassi, Fisiocamera for their role in the refinement of the Framework figure.

Disclosure statement

The authors report there are no competing interests to declare.

Data availability statement

All data sources supporting the results presented in the paper are in Supplementary file 2.

Additional information

Funding

The Rehabilitation Science Research Network is funded by the Temerty Faculty of Medicine at the University of Toronto. KKO is supported by a Canada Research Chair in Episodic Disability and Rehabilitation (2022-00510). Angela Colantonio is supported by a Canada Research Chair in Traumatic Brain Injury in Underserved Populations (2019-00019).