An adaptive approach to developing a Long COVID rehabilitation program

Abstract

As more people became infected with the SARS-CoV-2 virus, it was anticipated that 10-20% of these individuals would develop a post-viral illness that would affect their ability to work and participate in daily activities and reduce quality of life. To support these patients, Unity Health Toronto opened the Outpatient Post-COVID Condition Rehabilitation Program in June 2021, with the aim of teaching patients how to manage their ongoing symptoms, and to maximize their independence and function. The program incorporated a multidisciplinary, patient-centred approach that leveraged group education and a virtual platform to allow patients from across Ontario to learn from one another and share experiences. Over the two years of the program, the multidisciplinary team continuously adapted to the new research on Long COVID and evolving needs of patients. This article will outline the development and evolution of the program.

Background

As more people became infected with SARS-CoV-2 in 2020, many in the scientific community predicted a second pandemic of post-viral illnesses.^1,2 Unity Health Toronto, a network of two acute care and one post-acute rehabilitation hospitals, recognized the need for post-COVID-19 rehabilitation and expanded services to assist patients with a post-COVID condition, commonly known as Long COVID (LC), transition to independence at home. In May 2021, Unity Health drafted a briefing note to Ontario Health outlining the rationale for an Outpatient Post-COVID-19 Condition Rehabilitation Program, citing evidence that persistent post-COVID symptoms were impacting individuals’ health, functioning, and finances.³ At that time, the National Institute for Health and Care Research in the United States stated that in the absence of research guiding LC-specific treatments, interventions should draw from “expert consensus and evidence from other conditions.”⁴ New York’s Mount Sinai Health System opened the first multidisciplinary post-COVID centre just months into the pandemic,⁵ but in early 2021, there were few hospital-based LC rehabilitation programs in Canada open to external referrals. Internationally, the Leeds Teaching Hospitals NHS Trust developed a multidisciplinary rehabilitation pathway that incorporated in-person and virtual care.⁶ The Unity Health proposal drew from available guidance and existing models.

Based on Unity Health’s Intensive Care Unit (ICU) admissions and international statistics regarding individuals most susceptible to severe COVID-19 infections,^7,8 the expectation was that most patients needing rehabilitation would be older adults who had required hospitalization. The initial program model did not meet patients’ needs because (1) the majority were working age and had experienced only mild or moderate acute infections, (2) high referrals to the program led to long waits for service, and (3) traditional progressive rehabilitation did not adequately address the multisystem, chronic, episodic nature of the condition. The present article describes the program’s two-year evolution from a traditional progressive rehabilitation model to one emphasizing self-management and based in a group therapeutic education framework. We will highlight lessons learned and provide recommendations for future program planning, research and advocacy.

Program Model #1

The Unity Health Outpatient Post-COVID Condition Rehabilitation Program opened to physician referrals in June 2021, with no catchment area. Recognizing patients’ complex needs, and drawing on available information, the initial Unity Health program incorporated multidisciplinary, individualized care, patient education, and a mix of in-person and virtual rehabilitation.

The program accepted patients experiencing new or persisting symptoms more than 8 weeks after presumed or confirmed COVID-19 infection and not attributable to another cause. The allied health team included full-time Occupational Therapy (OT), Physiotherapy (PT), and Social Work (SW), and part-time (.4) Registered Dietician (RD) and (.6) Speech-Language Pathology (SLP). Physiatry (MD) was available for consults and could refer outside the program to other medical specialities (e.g., neurology, cardiology, and psychiatry). A Patient Flow Coordinator (PFC) reviewed and triaged referrals. Community Health Navigators (CHNs) collected Patient-Reported Outcome Measures (PROMs) by telephone at intake, discharge, and 6 months post-discharge, supported by a Research Assistant. Standardized PROMs rated fatigue (Functional Assessment of Chronic Illness Therapy (FACIT-4) – Fatigue Scale)⁹; functional status (Post-COVID Functional Status Scale – PCFS)¹⁰; physical and mental health-related quality of life (EQ5D - 5L)¹¹; and self-efficacy in chronic illness (PROMIS - Self-Efficacy).¹²

Patients completed four weekly one-hour virtual group education modules on managing common physical, cognitive, and emotional symptoms of LC. All patients were assessed by OT and PT. Internal referrals for SLP, RD, and SW could be made by team members based on identified needs (e.g., mood, cognitive communication, and nutrition). Clinicians could refer to the program MD or suggest a specialist referral to a patient’s Primary Care Practitioner (PCP). Virtual care was offered based on patient preference and location, and during subsequent COVID waves when in-person services were closed. Given the unknowns associated with the nature and course of LC, the initial model did not limit individual sessions and incorporated traditional progressive rehabilitation goals of maximizing function through education and therapy.¹³ Patients’ PCPs received a multidisciplinary discharge summary.

Outcomes of Program Model #1

In January 2022, program staff met to review the model in response to data collected and to patient and clinician experiences. Three key themes emerged:

Referral numbers and demographics

In the first 6 months, the program received an average of 30 referrals per month from within and outside the Greater Toronto Area. This suggested insufficient rehabilitation options for patients in outlying communities. Sustained high referrals impacted program wait times and internal waits for allied health services. Approximately 85% of the patients were 18-64 years old and were working and/or attending school at the time of their infection. Contrary to Unity Health’s expectations, greater than 80% had not been hospitalized with their acute infection; the majority were referred by PCPs in the community.

Evolving understanding of LC

At intake, the majority of patients reported severe fatigue on the FACIT-4. Other high-frequency symptoms included shortness of breath, cognitive dysfunction, depression and anxiety, chest pain, joint and muscle pain, and gastrointestinal issues. On the PCFS the majority rated themselves as “unable to perform all usual duties/activities/work due to symptoms”; a smaller number was “dependent on nursing care and/or assistance from another person due to symptoms,” highlighting symptom severity and functional implications, particularly for working-age individuals.

Consistent with information shared in the scientific and patient communities at that time,¹⁴ patients reported receiving new diagnoses or exacerbations of pre-existing conditions including dysautonomia, migraines, asthma, diabetes, and autoimmune disorders. Many reported an episodic pattern of Post-Exertional Symptom Exacerbation (PESE): severe fatigue and worsening of other symptoms with physical, cognitive, or emotional exertion, similar to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).¹⁵ Clinicians noted that assessment or treatment sessions sometimes triggered episodes of PESE.

The evolving scientific literature and patients’ experiences categorized LC as a chronic illness, with fluctuating symptoms and severity consistent with other episodic and post-viral illnesses such as ME/CFS.¹⁶ In this context, clinicians, patients, and PCPs initially had unrealistic expectations for complete rehabilitation and recovery, making discharge more challenging.

Program and system gaps

The usual model of care, with the PCP coordinating recommendations from medical specialists, often did not meet the needs of patients with LC, a condition in which one symptom might represent a dysfunction in more than one system (e.g., cardiac, respiratory, and immune).¹⁷ Few specialists had experience with LC at that time, and waitlists were lengthy and patients were often sent back to their PCP with normal test results and little to suggest other than to exercise their way back to health, a recommendation with the potential to cause harm for those with PESE.¹⁸ Understandably, PCPs and patients often expected the program to provide specialized medical care and case coordination. Many patients’ complex concerns were outside the scope of the allied health team. Patients felt validated by meeting others with this new condition during the introductory modules and suggested including formal peer support.

Because of patients’ relatively young age, they frequently required documentation for medical or disability leave, income support programs, and employment or academic accommodations. Many insurers and employers expressed disbelief in the medical basis for symptoms. This was a significant source of stress and fatigue for patients, and clinicians invested time and effort to provide evidence-based documentation.

Program Model #2

The lessons learned during the initial months led to program revisions in line with the three identified themes: reducing wait times; enhancing components supported in the chronic illness and LC literature; and addressing service gaps where possible (Table 1).

Table 1.

Comparative summary of program models.

	Program Model #1	Program Model #2	Program Model #3
Referral criteria	New or persisting symptoms more than 12 weeks after presumed or confirmed infection with COVID-19 that were not attributable to another cause	Unchanged	Unchanged
Patient-Reported Outcome Measures (PROMs)	FACIT - Fatigue⁹	Unchanged	Unchanged
	PCFS¹⁰
	EQ5D - 5L¹¹
	PROMIS - Self-Efficacy¹²
PROMs: Collection	Telephone or virtual call	By mail or e-mail	By e-mail
PROMs: Timing	Intake, discharge, and 6 months	Unchanged	Unchanged
Internal referrals	Based on document review, intake interview; additional referrals as needed during admission	Based on document review including completed intake questionnaire; formal discipline-specific criteria	Consults available when urgent issue flagged on intake questionnaire, or by patient or team during program
Assessments	Discipline-specific protocols: Formal standardized and non-standardized assessment measures	Discipline-specific protocols: Predominantly screening with some assessment measures	Only if needed based on consult
Discharge criteria	Meaningful progress toward restoration and recovery of function	Patient has received education needed to self-manage symptoms	Completion of scheduled sessions
Documentation provided	Brief letters supporting return to work accommodations, disability leave	Detailed evidence-supported, individualized letters in support of gradual and accommodated return to work and school, disability leave, ODSP, and CPP-D benefits	Discharge summary confirming participation in program, links to practice guidance, implications for return to work, recent evidence, and other resources
Documentation provided	Multidisciplinary discharge summary	Multidisciplinary discharge summary
Treatment approach	Therapeutic education + individual rehabilitation	Therapeutic education + individual rehabilitation	Therapeutic education
Group education	All patients completed 4 introductory modules (What is Long COVID; physical, cognitive, and emotional symptoms)	All patients completed 5 introductory modules (addition of nutrition module); Social Work added peer support groups; SLP treatment incorporated 3 cognitive communication group education modules	8 week program
			20-25 patients
			2 sessions per week
			Additional drop in sessions (recreation, gentle stretching)
Virtual available	Yes; primarily in-person PT/OT assessments	Yes – shift to primarily virtual	Virtual only
Individual treatment	Yes	Yes	No
Formal peer support	No	Yes – optional peer support group	Yes – optional dedicated peer support group; opportunities for peer support and information sharing in every education module
Patient education and resource portal	No	No	Yes – session slides, videos, handouts and links to other resources
Family education	No	No	FAQ with Post-COVID team

Program Model #2 was implemented in April 2022. Rehabilitation goals and discharge criteria were explicitly aligned with chronic illness self-management and stabilization of symptoms rather than targeting a return to baseline. To set realistic expectations for patients and referring physicians, the referral form outlined program goals, resources, and discharge criteria. Most sessions shifted to virtual care to accommodate patients living outside the local area, those with work or childcare obligations and those who needed to minimize the risk of PESE. To ensure appropriate, timely internal referrals, patients completed intake questionnaires that included discipline-specific referral criteria. Collecting PROMs via e-mail prior to starting the program reduced the resources required for CHN calls.

The introductory group education modules were updated to reflect new research. Patients could access a limited number of 1:1 consultations with clinicians, and SW and SLP groups provided peer support and more efficient information delivery. Individual sessions were offered by telephone for patients without internet access or unable to tolerate the sensory load of virtual sessions.

All disciplines emphasized self-management (e.g., compensatory cognitive strategies). Goals included increased stabilization of symptoms, function, and health self-efficacy, a sense of control which for those with chronic illness correlates with improved physical and emotional well-being and quality of life.^19,20 The team screened patients for patterns of PESE and followed ME/CFS recommendations centred on pacing and energy conservation strategies rather than graded exercise therapy.

Letters for PCPs, insurers, and income support included patient-specific recommendations, education about LC as a chronic episodic illness, and links to evidence and resources. To increase community expertise, team members presented on LC and the program to the local community health network, provincial Legal Aid clinics, and physician and allied health professional groups. The program collaborated with a community organization offering virtual peer support to patients after discharge.

Outcomes of Program Model #2

In the absence of CHN follow-up, rates of discharge and 6-month PROM completion were low, but patient feedback (e.g., by e-mail) was generally positive (Table 2). Many expressed appreciation for peer connections and for the team’s advocacy.

Table 2.

Patient feedback about the Outpatient Post-COVID Rehabilitation Program.

Program Model #1	“It’s a terrifying thing to have to navigate something like this alone (especially for those who may not have an understanding of what’s happening) and you and the rest of the team at the clinic provide such a vital lifeline.”
	“Thank you so much for all your help and support. It was truly transformative and I really can’t thank you enough.”
	“Thank you, for all the time you spent with me. It has been so helpful to help me get to the next part of this journey…I feel the good parts of the old me on the horizon and that wouldn’t have been possible without the therapy I have received so far. I am very grateful.”
Program Model #2	Program content
	“I will forever say that the efforts your team has put forth saved my life… There is definitely so much that others don’t know or understand about living with long haul COVID. Again I appreciate you going out of your way to both educate and bring our voices to light.”
	“Thank you for everything you have done for me, taught me, the resources and the extra confidence you give me after each session. My experience with the program has been invaluable.”
	“This is a great program. It really helps with my day to day life. Like doing work around the house, planning my time/energy level for an event.”
	Group and peer support
	“Thank you so much for these group sessions. They have been absolutely invaluable and I feel so validated afterwards. So grateful for you and the COVID team at Providence.”
	“I met some amazing people on the program that I was in and I’m so fortunate for them because they helped me get through one of the darkest times of my life and they were there, and it felt good not to feel lonely. And the people that I met had their own stories to tell and the support we had for each other was beautiful.”
	“Thank you for going over so many things I have been struggling with and how to deal with the comment ‘you look so normal’. It is so hard to hear as people do not see what it takes to look “normal.” Thank you again for running the group session. It really helps knowing I am not alone in this journey.”
	Validation
	“Most importantly, this has helped me with knowing I’m not alone, and what I’m going through is part of Long COVID.”
	“It’s so nice to talk to someone who actually understands what I’m going through, it’s exhausting to have to explain it to my family and friends.”
	“So few people are understanding or supportive of those of us with Long COVID, that it's an immense sense of relief to have actual proof from the professionals at Providence/Unity that this IS happening to me and that it is clear that something has to change.”
Program Model #3	“In our Post-COVID group, a universal sentiment is that, except for this group, we have felt the lack of information and resources to help us exist with this new illness. With this carefully designed and compassionately administered program, we are finally given the tools to holistically rebuild what we so often sacrificed to take care of others.”
	“The information shared has been beneficial. So many resources, ideas shared in these sessions. So grateful there will be the portal remaining. It would be great if they would consider keeping it updated as more information emerges about Long COVID.”
	“I want to thank the team at the Post-COVID Clinic that have done such a great job of putting this information together with such kindness… I felt welcomed and not judged.”

Few reported complete recovery. On admission, 74% of patients identified return to work/school as a goal; available discharge data indicated that 26% reported returning on at least an accommodated basis. Return to leisure was a goal for 94% of patients; by discharge 37% had resumed leisure activities to some degree.

The primary factor leading to a second, more radical, program revision was continued high demand, with up to 200 patients accepted and waiting for service for 12-20 weeks despite the initial program changes.

Program Model #3

The program team collaborated on the second revision, which again benefited from Unity Health patient and clinician experiences, as well as information shared by clinics providing LC services internationally. While guidance around targeted treatment remained incomplete, there was early evidence in the LC literature for peer support.²¹ Given expanded scientific knowledge of the chronicity of LC, the team drew on evidence supporting a group therapeutic education framework for individuals with chronic illnesses,^22-24 and for the use of virtual platforms for patient education.²⁵ Program Model #3 (Table 1), launched May 2023, was a virtual group therapeutic education program that aimed to address wait times as well as other themes identified earlier, while meeting the key rehabilitation goals: increasing self-efficacy, stabilizing symptoms, and improving function.

Referral sources and patients were clearly informed regarding the program format and that the PCP would continue to be responsible for care. Two cohorts of 20 to 25 patients could be admitted each week, to a maximum of eight cohorts running concurrently.

Clinicians developed a series of 16 modules, delivered twice weekly during one-hour virtual sessions over 8 weeks. Two clinicians facilitated each module, providing discipline-specific and general information on LC, evidence-guided strategies for managing symptoms, and opportunities to ask questions and connect with other patients. Problem-solving modules focused on applying strategies to specific challenges shared by patients (Table 3). A patient portal was developed to allow patients and care partners’ continuous access to module recordings and supplemental material.

Table 3.

Outline of virtual group education sessions in Program Model #3.

Core education series - 16 sessions^a
Module	Clinical lead
^bWhat is Long COVID?	Physiatrist
^bPhysical activity and exercise	Physiotherapist or occupational therapist
^bThinking, attention, and memory	Occupational therapist
^bManaging emotions and building resilience	Social worker
Taking a bite out of Post-COVID Condition	Registered dietician
Voice, cough, and swallowing	Speech-language pathologist
Cognitive communication	Speech-language pathologist
Fuelling for fatigue	Registered dietician
Observing ourselves and creating flexibility	Social worker
Brain fog: Navigating through the haze (problem-solving)	Speech-language pathologist and occupational therapist
Self-advocacy strategies (problem-solving)	Social worker and speech-language pathologist
Fatigue and pacing (problem-solving)	Occupational therapist
Reviewing financial options	Social worker
Return to work/school (problem-solving)	Occupational therapist
Drop-in sessions - led by program team members
Creating connections peer support	Mindfulness and gentle stretches
Finding joy in leisure activities	Managing taste and smell changes
FAQ with Post-COVID team	Caregiver/Community session

^aSessions on dysautonomia/POTS, breathing not offered as program had no PT at this time.

^bOriginal four introductory education sessions.

Patients could use a secure e-mail address to share questions or feedback not easily addressed in a group setting. If a concern was identified during intake, a group session, or via e-mail, a consult with one of the clinicians was offered. The general discharge letter included a program description, LC education, and links to reliable sources of physician guidance, evidence, and return to work resources. Patients could share this with employers and insurers as needed. In response to patients’ suggestions, the portal was made publicly searchable to allow community access to program resources (https://unityhealth.to/patients-and-visitors/covid-19/outpatient-post-covid-condition-resources/).

Outcomes of Program Model #3 and program closure

Again, without allocated resources to prompt completion of repeat PROMs, there was limited outcome data; however, patient feedback regarding the program and the portal was largely positive (Table 2). The group therapeutic education model was in place for only three months before funding lapsed.

Lessons learned

A total of 844 patients were served by the Unity Health program. Two years of program planning, implementation, and revision provided important lessons that can be applied to future programs and clinical research for individuals with LC or similar chronic and episodic conditions.

Virtual group platform and peer support

Utilizing a virtual group model made the program more accessible to patients who were working, providing care at home, outside Toronto or too debilitated to attend in-person. Chronic conditions are often misunderstood and isolating,²⁶ but patients found support in the groups and learned from peers’ lived experiences. The patient portal allowed patients to review session information and to share with care partners and Healthcare Providers (HCPs).

Validation

The importance of validation was a repeated theme across the life of the program. Patients described the burden of having their symptoms and experiences dismissed by family, friends, and HCPs. As evidence for the pathophysiological mechanisms underlying LC accumulates, this is a reminder to HCPs of the inadequacy of care that dismisses what is not yet understood.

Patients are the experts of their illness

At a time when little was known about LC, the team came to understand the breadth and severity of the illness through interactions with patients. Collaboration between patients and clinicians led to program revisions that improved care and honoured the patients’ experiences.

Advocacy

The program provided self-advocacy tools, but the severity of LC symptoms makes it unrealistic for patients to persevere with these tasks alone. There remains limited awareness of chronic and episodic disabilities in the insurance and vocational rehabilitation fields. Some individuals are refused leave and suffer severe health and quality of life impacts; others who remain off work could return if given accommodated schedules or responsibilities. Inadequate social and income supports can result in food, housing, and financial insecurity. A new condition like LC demands advocacy in the community, government, healthcare and public and private insurance systems to support patients’ ongoing care, participation in work and family, and quality of life.

Impact on program staff

Staff were impacted by factors affecting all those providing healthcare during the COVID-19 pandemic. In addition, there were emotional burdens associated with working with individuals diagnosed with a new condition, facing threats to employment, finances, and relationships. The program closure was a source of moral distress for the staff. Countering these burdens were the meaningful inclusion of staff in program revisions; clear, honest, and timely communication from managers; ongoing positive feedback from patients; and daily opportunities for team collaboration and support.

Program and system gaps

The final program model could not address all the complex medical, mental health and social support challenges, or fulfil requests for individualized documentation. It was challenging for facilitators to monitor the emotional well-being of patients as some did not comment during sessions. Adequately funded programs should provide meaningful peer support and therapeutic education, but be able to address individuals’ complex medical needs, mental health concerns, or threats to food and housing security. Offering the recorded modules and program materials on the portal may have increased access for shift workers or those with precarious work, but future programs should consider flexible scheduling options. Providing service and materials in multiple languages would further increase access.

System wide, improved access to speciality LC care and medical specialists is needed; at present, the onus is on PCPs and walk-in clinics to coordinate complex care, educate patients, and provide detailed documentation for employers and insurers.

Finally, there were insufficient resources to pursue the outcome data necessary to support the need for and benefits of LC care.

Research opportunities

Research into the pathophysiology and multisystem impacts of LC will hopefully lead to targeted treatments and medications; in the meantime, there are opportunities to evaluate rehabilitation approaches to the impairments and devastating functional impacts of LC. The present paper describes the unexpected evolution of a rehabilitation program rather than outcomes of clinical research, but lays groundwork to prospectively study the effectiveness and feasibility of model components, for example, the optimal balance of virtual and in-person care or of individual and group intervention. Future clinical research should also evaluate interventions beneficial in other illnesses that target individual symptoms such as PESE, shortness of breath, and brain fog.

Conclusion

Beginning in 2021 when little was known about LC rehabilitation, the Unity Health program team adapted care by incorporating patient and clinician experiences and evidence from the LC and chronic disease literature. The final program model, a virtual group therapeutic education series, accommodated high referrals while providing peer support and symptom self-management strategies. Continued advocacy is needed to address multiple persisting gaps in healthcare, insurance, social support, and vocational rehabilitation systems.

Footnotes

Acknowledgements

This program was a collaboration between the remarkable patients who shared their experiences, and a resilient and compassionate team of professionals: Kelly Tough, OT Reg.(Ont.); Dr. Albert Cheng, MD, FRCPC; Dr. Ashley Verduyn, MD, FRCPC; Lori Brady, PT, MSc, PT, MHSc, CHE, PMP; Aruba Adnan, BSc, Cassandra Chan, RD; Leigh Ann Gray; Erin Leneeuw, BA; Christina Lee, BSc, PT; Nicole Luinenburg, RD, Monica McCullagh, BA (Hons); Irene Nicolakis, MSc, PT; and Dione Romero, MSW, RSW.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Ethical approval

Institutional Review Board approval was not required.

ORCID iDs

Sonya Torreiter

Peggy So

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