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World Physiotherapy response to COVID-19 Briefing paper 9SAFE REHABILITATION APPROACHES FOR PEOPLE LIVING WITH LONG COVID: PHYSICAL ACTIVITY AND EXERCISE June 2021 World Physiotherapy briefing papersWorld Physiotherapy briefing papers inform our member organisations and others about key issues thataffect the physiotherapy profession
World Physiotherapy is producing a series of papers in response to COVID-19
AcknowledgementIn February 2021 World Physiotherapy collaborated with Long COVID Physio to develop a briefing paperon safe rehabilitation for people living with Long COVID. The purpose was to gather key opinion leadersand stakeholders from the global community in Long COVID and physiotherapy. This briefing paper bringstogether individuals from across the World Physiotherapy regions, community groups, organisations,interdisciplinary clinical practice, and academia to identify statements on safe rehabilitation approaches forpeople living with Long COVID
This paper has been produced with the helpful contributions from the following:Darren Brown, Caroline Appel, Bruno Baldi, Janet Prvu Bettger, Michelle Bull, Tracy Bury, JeffersonCardoso, Nicola Clague-Baker, Geoff Bostick, Robert Copeland, Nnenna Chigbo, Caroline Dalton, ToddDavenport, Hannah Davis, Simon Decary, Brendan Delaney, Jessica DeMars, Sally Fowler-Davis, MichaelGabilo, Douglas Gross, Mark Hall, Jo House, Liam Humphreys, Linn Järte, Leonard Jason, Asad Khan,Ian Lahart, Kaba Dalla Lana, Amali Lokugamage, Ariane Mangar, Rebecca Martin, Joseph McVeigh, MaxiMiciak, Rachael Moses, Etienne Ngeh Ngeh, Kelly O’Brien, Shane Patman, Sue Pemberton, SabrinaPoirer, Milo Puhan, Clare Rayner, Alison Sbrana, Jaime Seltzer, Jenny Sethchell, Ondine Sherwood, EmaSingwood, Amy Small, Jake Suett, Laura Tabacof, Catherine Thomson, Jenna Tosto-Mancuso, RosieTwomey, Marguerite Wieler, Jamie Wood
Recommended citation:World Physiotherapy. World Physiotherapy Response to COVID-19 Briefing Paper 9. Safe rehabilitationapproaches for people living with Long COVID: physical activity and exercise. London, UK: WorldPhysiotherapy; 2021
ISBN: 978-1-914952-00-5 Author affiliations IntroductionSafe and effective rehabilitation is a fundamental part of recovery from illness and can improvefunction in people living with disability. Currently insufficient evidence exists to guide best practice forsafe and effective rehabilitation in people living with Long COVID. Comparisons have been drawnbetween the symptoms and experiences of people living with Long COVID and other infectionoutbreaks such as severe acute respiratory syndrome (SARS), Middle East respiratory syndrome(MERS), Chikungunya and Ebola,1-7 albeit now on an unprecedented scale. Selected symptoms alsooverlap with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which is often triggeredby infection and immune activation.8,9 In the absence of evidence for best practice in Long COVIDrehabilitation, the heterogeneity of symptom presentation and clinical course in people living withLong COVID, and the lessons learned in people living with ME/CFS, caution may be required whenrecommending all forms of physical activity. In particular it is currently unknown when and by whatamount physical activity (including exercise or sport) is safe or beneficial, so that it does not impairfunctioning among adults, young people and children living with Long COVID
Key messagesSafe rehabilitation • Post-Exertional Symptom Exacerbation: before recommending physical activity (including exercise or sport) as rehabilitation interventions for people living with Long COVID, individuals should be screened for post-exertional symptom exacerbation through careful monitoring of signs and symptoms both during and in the days following increased physical activity, with continued monitoring in response to any physical activity interventions
• Cardiac Impairment: exclude cardiac impairment before using physical activity (including exercise or sport) as rehabilitation interventions for people living with Long COVID, with continued monitoring for potential delayed development of cardiac dysfunction when physical activity interventions are commenced
• Exertional Oxygen Desaturation: exclude exertional oxygen desaturation before using physical activity (including exercise or sport) as rehabilitation interventions for people living with Long COVID, with continued monitoring for signs of reduced oxygen saturation in response to physical activity interventions
• Autonomic Dysfunction and Orthostatic Intolerances: Before recommending physical activity (including exercise or sport) as rehabilitation interventions for people living with Long COVID, individuals should be screened for autonomic nervous system dysfunction, with continued monitoring for signs and symptoms of orthostatic intolerance in response to physical activity interventions
Page 1 of 26 Long COVID • Long COVID is an emerging condition that is not yet well understood but can be severely disabling, impacting people regardless of hospitalisation or severity of acute COVID-19
Assessment • Asking people with Long COVID about their symptoms and the impact of physical, cognitive, and social activities on symptoms 12 hours or longer after exertion, may help to identify people experiencing post-exertional symptom exacerbation
• Risk stratification is recommended among people with symptoms suggestive of cardiac impairment before returning to physical activity
• It is critical to establish the reason or source of chest pain, dyspnoea, tachycardia, or hypoxia, to prevent harm and appropriately guide physical activity including exercise
• The possibility of persisting low-grade cardiac injury should be considered when assessing protracted COVID-19 illness and providing fitness for work advice, particularly in the context of jobs involving strenuous physical activity
• Evidence of hyperventilation and breathing pattern disorders identified through careful monitoring can facilitate access to specialist respiratory physiotherapy
Rehabilitation approach • Safe and effective rehabilitation is a fundamental part of recovery from illness and can improve function in people living with disability
• Considering the clinical complexity and uncertainties of Long COVID, functioning therapeutic relationships are critical in maintaining safe rehabilitation approaches through recognition, validation and inclusion of patient experiences as a means of personalising treatment
• Long COVID rehabilitation should include educating people about resuming everyday activities conservatively, at an appropriate pace that is safe and manageable for energy levels within the limits of current symptoms. Exertion should not be pushed to the point of Page 2 of 26 fatigue or symptom exacerbation, both during and in the days following exertion
• In the presence of post-exertional symptom exacerbation, “Stop
Rest. Pace”, activity management or pacing, and heart rate monitoring may be effective rehabilitation approaches to support self-management of symptoms
• Rehabilitation should aim to prevent desaturation on exertion, with awareness that late deterioration of COVID-19 can still occur
Desaturation on exertion ≥3% requires investigation
• When orthostatic hypotension is present, the following interventions could be considered: autonomic conditioning therapy, utilisation of non-upright exercises, use of isometric exercises, compression garments, and patient education for safety
• Aiming to achieve sustainable symptom stabilisation, whereby symptom fluctuations are reduced to a manageable level over a period of time, can constitute a rehabilitation approach that improves symptom severity and daily functioning
• Physiotherapists can play an important role in the rehabilitation of people living with Long COVID, to balance activities with rest to optimise recovery, and consider other factors important in symptom management beyond solely physical activity
Physical activity • Physical activity of all forms might benefit some people living with Long COVID, but could be contraindicated or exacerbate symptoms in others. Using a cautious approach to physical activity will likely support longer-term recovery
• Physical activity, including exercise, prescription in Long COVID should only be approached with caution and vigilance, ensuring rehabilitation programmes are restorative and do not make an individual’s symptoms worse both during and in the days following
• Autonomic dysfunction, presenting as breathlessness, palpitations, fatigue, chest pain, feeling faint (presyncope) or syncope, could contribute to the exercise intolerance observed in people with Long COVID
• Due to the risk of worsening symptoms with overexertion in Long COVID, it is critical that physical activity, including exercise, interventions are applied with caution and careful clinical decision making based on symptoms during and in the days following exertion
Page 3 of 26 ContextWorld Physiotherapy comprises 125 member organisations across five regions and from low, middleand high resource settings. Hence, there is great diversity in the delivery of physiotherapy andrehabilitation services in the countries and territories of its member organisations
We note that there are various contexts in which practice takes place and a diversity of health caredelivery systems in which physiotherapy is practised globally. Moreover, the trajectory and impact ofthe COVID-19 pandemic over time mean that as cases rise and fall in different regions, societies andcommunities will be affected in different ways and at different times. We recognise that the statementsin this current briefing paper require consideration of available health care resources andacknowledgement that health care disparities are affected by social determinants.10World Physiotherapy is in close contact with its member organisations across all settings and hasbeen collating resources generated nationally and publications emerging via its COVID-19 knowledgehub. We will continue to provide links to resources to inform practice, drawing on resources fromwithin the profession and other global organisations
PurposeThis briefing paper aims to support physiotherapists and other healthcare professionals in theprovision of safe and effective Long COVID rehabilitation practice, research and policy until furthergood quality evidence pertaining to physical activity (including exercise or sport) in Long COVID isavailable
Statements are provided with supporting rationale and actions, to indicate when caution withprescribing physical activity as rehabilitation interventions must be applied. Physical activity of allforms might benefit some people living with Long COVID, but could be contraindicated or exacerbatesymptoms in others. Using a cautious approach to physical activity will likely support longer-termrecovery. This paper is not a guideline, standard, or policy. It is a consensus opinion statement basedon the experience of experts in the field of Long COVID, rehabilitation, lived experience, and relatedimpairments and conditions. The paper does not cover acute COVID-19 presentations managed inhospital or community settings. This paper is a “living document” and will be updated as evidencecontinues to emerge in the context of rehabilitation, physical activity, and Long COVID. This papermay also be relevant to people living with other chronic illnesses commonly associated withinfections
Key opinion leaders and stakeholders: bringing diverse perspectivesPhysical activity, including exercise or sport, as rehabilitation approaches for people living with LongCOVID and other conditions commonly triggered by an infection, such as ME/CFS, has generateddebate. This necessitates considerations for the knowledge, skills and perspectives of rehabilitationprofessionals, clinicians, academics and policymakers. Key opinion leaders and stakeholders wereassembled to generate statements on safe physical activity-based rehabilitation approaches fromdiverse perspectives including people living with Long COVID, physiotherapists, physicians - includingphysical medicine and rehabilitation physicians - exercise physiologists, psychologists, occupationaltherapists, academics, advocacy groups, and people living with ME/CFS, from regions includingAfrica, Asia Western Pacific, Europe, North America Caribbean, and South America
Page 4 of 26 What is Long COVID?Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is the virus that causes coronavirusdisease (COVID-19).11 COVID-19 can cause persistent ill-health. A quarter of people who have hadthe virus may experience symptoms that continue for at least a month, more than 1 in 10 may remainunwell after 12-weeks,12-15 and others may have ongoing symptoms for longer than 6 months.16-19 Thepost-acute sequelae of COVID-19 have been described by patient groups as “Long COVID”,20-22 andas “post-COVID conditions” by the World Health Organization (WHO) and United States Centers forDisease Control and Prevention (CDC).23,24 Long COVID is an emerging condition that is not yet wellunderstood but can be severely disabling,13,15,25 impacting people regardless of hospitalisation orseverity of acute COVID-19.2,26-34 We do not yet know the risk factors for developing Long COVID,who is more likely to recover, or how it can be treated. Research is urgently needed to betterunderstand the underlying pathophysiological mechanisms.20 Current knowledge demonstrates thatLong COVID can affect multiple body systems including the respiratory, cardiac, renal, endocrine andneurological systems.15,16,19,26,28,35-38 People present with clusters of overlapping symptoms such asfatigue or exhaustion, chest pressure or tightness, shortness of breath, headache, and cognitivedysfunction.16,38 Long COVID can be multi-dimensional, spanning symptoms and impairments, activitylimitations and social participation restrictions.15,39-43 Long COVID may also be experienced asepisodic and unpredictable in nature, with symptoms fluctuating and changing over time.32,38 As such,Long COVID impacts people’s functional ability, social and family life, ability to work, and quality oflife.12,15,19,25,40,44-48 Dealing with such complexity requires a multidisciplinary approach and patients'involvement.3,49 What is Rehabilitation?Rehabilitation is defined as a set of interventions to optimise functioning in everyday activities, supportpeople to recover or adjust, achieve their full potential, and enable participation in education, work,recreation and meaningful life roles.50-54 Along with recognition and research, access to rehabilitationemerged as one of the three pillars of Long COVID campaigning,55 and succeeded in makingrehabilitation a Long COVID research priority,3 due to the disability experienced by people living withLong COVID.16 Rehabilitation is a fundamental health service under Universal Health Coverage,56addressing the impact of a health condition on a person’s life by focusing on improving functioningand reducing experiences of disability.54 Rehabilitation is highly person-centred and goal-oriented,meaning that the interventions and approaches selected are tailored to an individual depending ontheir symptoms, goals and preferences.54 Physical activity (including exercise or sport) is arehabilitation intervention, often used in conjunction with other approaches, for a range of differenthealth conditions, to enhance function and wellbeing.57,58Person-centred rehabilitationPerson-centred approaches to Long COVID rehabilitation will require conscious attention to thetherapeutic relationship; the relationship between clinician and patient also known as therapeutic orworking alliance.59 This important aspect of clinical interaction is a pillar of person-centredrehabilitation,60,61 which improves clinical outcomes.62-64 Therapeutic relationships hinge uponclinicians creating space where patients feel safe to openly engage in rehabilitation,65 with meaningfulconnections established when clinicians acknowledge and believe patients’ lived experiences, activelyinclude them in decision making, and are receptive and responsive to their suggestions, needs andvalues.65-69 Considering the clinical complexity and uncertainties of Long COVID, functioningtherapeutic relationships are critical in maintaining safe rehabilitation approaches, throughrecognition, validation and inclusion of patient experiences as a means of personalising treatment
Page 5 of 26 Patient-reported outcome or experience measures (PROM or PREM) such as the EuroQOL EQ-5D-5L, Consultation and Relational Empathy (CARE) Measure, and Working Alliance Inventory, can helpoperationalise personalised treatment. Specific to physiotherapy, the Person-Centered TherapeuticRelationship in Physiotherapy (PCTR-PT) scale (available in Spanish),70,71 and PhysiotherapyTherapeutic Relationship Measure (available in English),72 may support evaluation of therapeuticrelationships. Gaps in some areas of rehabilitation research exist, therefore Cochrane Rehabilitationand WHO Rehabilitation Programme developed the COVID-19 rehabilitation research framework toinform best practice and ensure rehabilitation services and health systems can best serve populationsaffected by COVID-19 and Long COVID.73What are physical activity and exercise?“Physical activity” and “exercise” are different approaches that may be considered in the context ofrehabilitation. Each term refers to a different concept, however the terms are often confused with oneanother and sometimes used interchangeably.74Physical activity is defined as any bodily movement produced by skeletal muscles that results inenergy expenditure.74 Physical activity in daily life can be categorised into occupational, sports,conditioning, household or other activities. Physical activity should not be confused with exercise,which is a sub-category of physical activity. Exercise is defined as planned, structured, repetitive, andpurposeful activity focused on improvement or maintenance of physical fitness.74Physical fitness is a set of attributes that are health- or skill-related.74 Exercise therapy used to treathealth conditions can be broadly categorised into aerobic, resistance, combined aerobic andresistance, and condition-specific exercises used to target specific functional impairments, such asstretches or balance training.57,58Graded exercise therapy is an approach prescribed by clinicians, based on fixed incrementalincreases in physical activity or exercise.19 Although physical activity including exercise is oftenbeneficial for health, this is not always the case,75 where different mechanisms can explain thepathophysiology of exercise intolerance in a range of chronic conditions.76 Safe rehabilitation statement 1Box 1: post-exertional symptom exacerbation Before recommending physical activity (including exercise or sport) as rehabilitation interventions for people living with Long COVID, individuals should be screened for post-exertional symptom exacerbation through careful monitoring of signs and symptoms both during and in the days following increased physical activity, with continued monitoring in response to any physical activity interventions
RationaleThe most common symptom of Long COVID is fatigue or exhaustion,6,16-19,28,34,77-84 a symptom whichdoes not result from unusually difficult activity, is not easily relieved by rest or sleep, can limitfunctioning in day-to-day activities, and negatively impact quality of life.85 People living with LongCOVID can additionally experience post-exertional symptom exacerbation,16 also described as post-exertional malaise (often abbreviated to PEM) or post-exertional neuroimmune exhaustion. Post-exertional symptom exacerbation can be defined as the triggering or worsening of symptoms that can Page 6 of 26 follow minimal cognitive, physical, emotional or social activity, or activity that could previously betolerated.86-91 Symptoms worsened by exertion can include disabling fatigue or exhaustion, cognitivedysfunction or “brain fog”, pain, fever, sleep-disturbance, wheezing, diarrhoea, olfactory dysfunctionsuch as parosmia, and exercise intolerance. Symptoms typically worsen 12 to 48 hours after activityand can last for days or even weeks,91,92 but with considerable variability.88,92 People may describeexperiencing a “crash” or “relapse” when a sustained or marked exacerbation of symptoms lastslonger than shorter episodes or a flare-up, requiring a substantial and sustained adjustment to aperson’s activity management.91 During a relapse, symptoms and level of disability may be similar toillness onset, and relapses can lead to a long-term reduction in a person’s capacity to performactivities.91Among a sample of 3,762 people living with Long COVID across 56 countries, 72% reported post-exertional symptom exacerbation.16 People living with Long COVID describe the episodic nature ofLong COVID symptoms and impairments,15,16,19,38,83 and note exercise, physical activity, or cognitiveexertion as common triggers for symptom relapse.16,38,40 While there is evidence that physical activitycan reduce fatigue in some chronic conditions where fatigue is a common symptom,93-97 significantnegative impact can result if physical activity is not carefully tailored to the individual.98Quota-based graded exercise programmes can result in harms to patients with post-exertionalsymptom exacerbation.89,99-102 As such, in 2017 the United States Centers for Disease Control andPrevention (CDC) removed graded exercise therapy from ME/CFS guidelines,89,99 and the UnitedKingdom National Institute of Health and Care Excellence (NICE) recently removed graded exercisetherapy from draft ME/CFS guidelines.91 Recognising this, NICE cautioned against the use of gradedexercise therapy for people recovering from COVID-19.19,103,104WHO recommends that Long COVID rehabilitation should include educating people about resumingeveryday activities conservatively, at an appropriate pace that is safe and manageable for energylevels within the limits of current symptoms.105 Exertion should not be pushed to the point of fatigueor symptom exacerbation, both during and in the days following exertion
ActionAssessment of post-exertional symptom exacerbation occurs by self-report. Asking people with LongCOVID about their symptoms and the impact of physical, cognitive and social activities on symptoms12 hours or longer after exertion, may help to identify people experiencing post-exertional symptomexacerbation.106 People may describe post-exertional exacerbation of fatigue as worsening tirednessor exhaustion, heaviness in limbs or whole body, cognitive dysfunction or “brain fog”, muscleweakness, and being drained of energy.107 Post-exertional exacerbation of other symptoms can bedescribed in various ways depending on the symptoms affected, with many people often able torecognise a wave of associated symptoms and their triggers before symptoms worsen
A brief 5-item questionnaire to screen for post-exertional malaise (Box 2), a sub-scale of the DePaulSymptom Questionnaire validated in people with ME/CFS,108 may be a useful screening tool in LongCOVID. It is designed to assess the frequency and severity of post-exertional symptom exacerbationover a six-month time frame.108-110 A score of 2 on both frequency and severity on any items 1 to 5, isindicative of post-exertional malaise.111 These five screening questions are recommended by theNational Institutes of Health/Centers for Disease Control and Prevention Common Data Elements(CDE) post-exertional malaise working group.112 Five supplemental questions are also available toexamine duration, recovery and exercise exacerbation (Box 2).108 It may be beneficial to utilise bothscreening and supplementary questions (questions 1-10) alongside self-report, until psychometricproperty evaluation of this tool in the context of Long COVID is available. The new DePaul Post-Exertional Malaise Questionnaire is also available to assess key characteristics, triggers, onset,duration, and effects of pacing.113 Page 7 of 26 Box 2: A Brief Questionnaire to Screen for Post-Exertional Symptom Exacerbation Supplementary Questions Reprinted with permission of author LA Jason108Two-day cardiopulmonary exercise testing (CPET) provides an objective measure of exerciseintolerance and impaired recovery and may have a role in assessing potential mechanisms ofexercise limitation among people with Long COVID.114,115The two-day CPET procedure first measuresbaseline functional capacity and provokes post-exertional symptom exacerbation, then assesseschanges in CPET variables 24 hours later with a second CPET to assess the effects of post-exertional symptom exacerbation on functional capacity.116 Reduced physiological function has beenobserved on the second CPET test in people living with ME/CFS, including reduced workload at theventilatory threshold, chronotropic intolerance (blunted heart rate response), and higher blood lactateat a given workload, that is not present in sedentary controls and therefore not a result ofdeconditioning.117-121 This reduction in physiological function appears to be sensitive to stratifyingdisease severity.121 As a result, CPET may provide important objective evidence of physiological andfunctional impairment used in legal determination of eligibility for social benefits based on disabilitystatus.122 However, CPET commonly results in symptom exacerbation or relapse so should be usedwith caution.109,116Additional approaches validated in other health populations could be conducted remotely, whilst stillvigilant to consider risk of symptom exacerbation, such as the 6-minute walk test, accelerometers,and activity monitors.123 Information from commercially available heart rate and activity monitors maybe used to both establish objective criteria for pacing programmes, and provide an external prompt Page 8 of 26
This briefing paper brings together individuals from across the World Physiotherapy regions, community groups, organisations, interdisciplinary clinical practice, and academia to identify …