Overview of dataset
This study generated three complementary datasets. First, the video recordings, minutes, and field notes of 12 quality improvement collaborative meetings, along with the evidence summaries prepared for these meetings and clinic summaries (e.g. descriptions of current practice, audits) submitted by the researchers-in-residence. This dataset illustrated wide variation in practice, and (in many topics) gaps or ambiguities in the evidence base.
Second, interviews with staff (n = 30) and patients (n = 27) from the clinics, along with ethnographic field notes (approximately 100 pages) from 12 in-person clinic visits, including notes on 52 patient consultations. This dataset illustrated the heterogeneity among the ten participating clinics.
Third, field notes (approximately 100 pages), including discussions on 230 clinical cases from the 34 MDT meetings we observed. This dataset revealed further contrasts (and some similarities) among clinics in how patients were managed. In particular, it illustrated how, for the complex patients whose cases were presented at these meetings, teams made sense of, and planned for, each case through multidisciplinary dialogue. This dialogue typically began with one staff member presenting a detailed clinical history along with a narrative of how it had affected the patient’s life and what was at stake for them (e.g. job loss), after which professionals from various backgrounds (nursing, physical therapy, occupational therapy, psychology, dietetics, and different medical specialties) joined in a discussion about what to do.
In sections 4.2 and 4.3, we explore two issues—difficulty defining best practice and the heterogeneous nature of the clinics—that were key to explaining why quality when pursued in a 10-clinic collaborative proved elusive. In section 4.4, we briefly summarize patients’ accounts of their experience in the clinics. We then give three illustrative examples of the elusiveness of quality improvement using topics that were prioritized in our collaborative: outcome measures (section 4.5), investigation of palpitations (section 4.6) and management of fatigue (section 4.7). In the final section of the results (4.8), we describe how MDTs proved crucial for local quality improvement.
‘Best practice’ in long covid: uncertainty and conflict
The study period (September 2021 to December 2023) corresponded with an exponential increase in published research on long covid. Despite this, the quality improvement collaborative found few unambiguous recommendations for practice. The problems were partly ontological (relating what long covid is). One major bone of contention in discussions with our patient advisory group, for example, was how far (and in whom) clinicians should look for and attempt to treat the various metabolic abnormalities that had been documented to date. The research literature on this topic was extensive but conflicting [18, 30, 79–81]; it was heavy on biological detail but light on clinical application. Patients were often aware of particular studies that appeared to offer plausible molecular or cellular explanations for symptom clusters along with a drug (often repurposed and off-label) whose mechanism of action appeared to be a good fit with the metabolic chain of causation. But most clinicians considered that the evidence was insufficiently strong to support routine measurement of clotting factors, antibodies, immune cells or other biomarkers or to prescribe mechanism-based therapies such as antivirals or anticoagulants. Another issue was the oft-repeated phrase that long covid is a ‘diagnosis by exclusion’, but the high prevalence of comorbidities meant that the ‘pure’ long covid patient untainted by other potential explanations for their symptoms was a textbook ideal. In one MDT, we observed a discussion about a patient who had had both swab- positive COVID-19 and erythema migrans (a sign of Lyme disease) in the weeks before developing fatigue, yet local diagnostic criteria for each condition required the other to be excluded.
The logic of management in most participating clinics was pragmatic: prompt multidisciplinary assessment and treatment with an emphasis on obtaining a detailed clinical history (including premorbid health status), excluding serious complications (“red flags”), managing specific symptom clusters (for example, physiotherapy for breathing pattern disorder), treating comorbidities (for example, anemia, diabetes or menopause) and supporting whole-person rehabilitation [7, 82]. The evidentiary questions raised in MDT discussions (which did not include patients) addressed the practicalities of the rehabilitation model (for example, whether cognitive therapy for neurocognitive complications is as effective when delivered online as it is when delivered in-person) rather than the molecular or cellular mechanisms of disease. For example, the question of whether patients with neurocognitive impairment should be tested for micro-clots or treated with anticoagulants never came up in the MDTs in our sample, though we did visit a tertiary referral clinic (whose lead clinician had a research interest in inflammatory coagulopathies) where such tests were offered.
Because long covid typically produces dozens of symptoms that tend to be uniquely patterned in each patient, the uncertainties on which MDT discussions turned were rarely about general evidence of the kind that might be found in a guideline (e.g. how should fatigue be managed?). Rather they concerned particular case-based clinical decisions (e.g. how should this patient’s fatigue be managed, given the specifics of this case?). An example from our field notes illustrates this:
Physical therapist presents the case of a 39-year-old woman who works as a cleaner on an overnight ferry. Has had long covid for 2 years. Main symptoms are shortness of breath and possible anxiety attacks, especially when at work. She has had a course of physical therapy to teach diaphragmatic breathing but has found that focusing on her breathing makes her more anxious. Patient has to do a lot of bending in her job (e.g. cleaning toilets and under seats), which makes her dizzy, but Active Stand Test was normal. She also has very mild mitral stenosis [someone reads out a cardiology report—not hemodynamically significant].
Rehabilitation guidelines (e.g. WHO) recommend phased return to work (e.g. with reduced hours) and frequent breaks. “Tricky!” says someone. The job is intense and busy, and the patient can’t afford not to work. Discussion on whether all her symptoms can be attributed to tension and anxiety. Physical therapist who runs the breathing group says, “No, it’s long covid”, and describes severe initial covid-19 episode and results of serial chest X-rays which showed gradual clearing of ground glass shadows. Team discussion centers on how to negotiate reduced working hours in this particular job, given the overnight ferry shifts.
--MDT discussion, Clinic H
This example raises important considerations about the nature of clinical knowledge in long covid. We return to it in the final section of the Results and in the Discussion.
Long covid clinics: a heterogeneous context for quality improvement
Most participating clinics had been established in mid-2020 to follow up patients who had been hospitalized (and perhaps ventilated) for severe acute covid-19. As mass vaccination reduced the severity of acute covid-19 for most people, the patient population in all clinics progressively shifted to include fewer ‘post-ICU [intensive care unit]’ patients (in whom respiratory symptoms almost always dominated), and more people referred by their general practitioners who had not been hospitalized (in whom fatigue, brain fog and palpitations were often the most troubling symptoms). Despite these similarities, the ten clinics had very different histories, geographical and material settings, staffing structures, patient pathways and case mix, as the following three examples show.
Clinic C, in a well-regarded inner-city teaching hospital, had been set up in 2021 by a respiratory physician. Its initial ethos and rationale had been ‘respiratory follow-up’, with strong emphasis on monitoring lung damage via repeated imaging and lung function tests and in ensuring that patients received specialist physical therapy to ‘re-learn’ efficient breathing techniques. Clinic C has tried to accommodate the shift towards a more fatigue-predominant case mix by embracing the wider aspects of rehabilitation. At the time of our fieldwork, each patient was seen in turn by a physician, psychologist, occupational therapist and respiratory physiotherapist (half an hour each) before all four staff reconvened in a face-to-face MDT meeting to form a plan for each patient. But whilst a wide range of patients with diverse symptoms were discussed at these meetings, there remained a strong focus on respiratory pathology (e.g. tracking improvements in lung function and ensuring that coexisting asthma was optimally controlled).
Clinic F, one of the first long covid clinics in UK, was set up by a rehabilitation consultant who had been drafted to work on the ICU during the first wave of Covid-19 in early 2020. He had a longstanding research interest in whole-patient rehabilitation, especially the assessment and management of chronic fatigue and pain. From the outset, clinic F was more oriented to rehabilitation, including vocational rehabilitation to help patients return to work. There was less emphasis on monitoring lung function or pursuing respiratory comorbidities. At the time of our fieldwork, clinic F offered both a community-based service (‘tier 2’) led by an occupational therapist, supported by a respiratory physiotherapist and psychologist, and a hospital-based service (‘tier 3’) led by the rehabilitation consultant, supported by a wider MDT. Staff in both tiers emphasized that each patient needs a full physical and mental assessment and help to set and work towards achievable goals, while staying within safe limits (not ‘overdoing it’). Because of the research interest of the lead physician, clinic F adapted well to the growing numbers of patients with fatigue and quickly set up research studies on this cohort [83].
Clinic D was established as a generalist ‘assessment-only’ service by a general practitioner with an interest in infectious diseases. It is led jointly by that general practitioner and an occupational therapist, assisted by a wide range of other professionals including speech and language therapy, dietetics, clinical psychology, and community-based physical and occupational therapy. It has close links with a chronic fatigue service and a pain clinic that have been running in the locality for over 20 years. The clinic, which is entirely virtual (staff consult either from home or from a small side office in the community trust building), is physically located in a low-rise building on the industrial outskirts of a large town, sharing office space with various community-based health and social care services. Following a one-hour telephone consultation by one of the clinical leads, each patient is discussed at the MDT and then either discharged back to their general practitioner with a detailed management plan or referred on to one of the specialist services. This arrangement evolved to address a particular problem in this locality—that many patients with long covid were being referred by their general practitioner to multiple specialties (e.g. respiratory, neurology, fatigue), leading to a leading to a fragmented patient experience, unnecessary specialist assessments and wasteful duplication. The generalist assessment by telephone is oriented to documenting what is often a complex illness narrative (including pre-existing physical and mental comorbidities) and working with the patient to prioritize which symptoms or problems to pursue in which order.
Details of the other seven clinics are available from the authors. Several aligned with either the ‘respiratory follow-up’ (clinic C above) or ‘rehabilitation’ (clinic F) secondary care models. In one densely-populated locality covering several large towns and cities, a sophisticated three-tier service (clinic G) was in place, with ‘tier 2’ led by a general practitioner, ‘tier 3’ by a respiratory physician and a region-wide ‘tier 4’ by a multi-specialty team of physicians (cardiologist, neurologist, immunologist, hematologist); ‘tier 1’ refers to self-management by the patient. In another locality, geographically remote and sparsely-populated, the long covid service (clinic H) was part of infectious diseases; Lyme disease (another infectious disease whose sequelae include chronic fatigue) was also prevalent in this region. We also visited a tertiary referral center linked to clinic J; it was run by a cardiologist with a special interest in dysautonomia and inflammatory coagulopathy (see quality topic 2 below). This clinic took referrals from the regular long covid service in that locality as well as from general practitioners and other hospital consultants.
The patient experience
Whilst the 10 participating clinics were very diverse in staffing, ethos and patient flows, the 27 patient interviews described remarkably consistent clinic experiences. Almost all identified the biggest problem to be the extended wait of several months before they were seen and the limited awareness of what long covid clinics could provide. Some talked of how they cried with relief when they finally received an appointment. Waiting times and bottlenecks were the top priority for quality improvement by clinic staff, who were very aware of how much delays and uncertainties in assessment and treatment compounded patients’ suffering. Most patients were satisfied with the care they received when they were finally seen in clinic, especially how they finally felt “heard” after a clinician took a full history. They were relieved to receive affirmation of their experience, a diagnosis of what was wrong and reassurance that they were believed. They were grateful for the input of different members of the multidisciplinary teams and commented on the attentiveness, compassion and skill of allied professionals in particular (“she was wonderful, she got me breathing again”—patient 00145 talking about a physical therapist). One or two patient participants expressed confusion about who exactly they had seen and what advice they had been given, and some did not realize that a telephone assessment had been an actual clinical consultation. A minority expressed disappointment that an expected investigation had not been ordered (one commented that they had not had any blood tests at all). Several thought the help and advice from the long covid clinic would continue to be offered until they were better, and were disappointed that they had been discharged after completing the various courses on offer.
In the next sections, we give examples of topics raised in the quality improvement collaborative and how they were addressed.
Example quality topic 1: Outcome measures
The first topic considered by the quality improvement collaborative was how (that is, using which measures and metrics) to assess and monitor patients with long covid. In the absence of a validated biomarker, various symptom and quality of life scales—both generic and disease-specific—were mooted. Clinic F had already developed and validated a patient-reported outcome measure (PROM), the C19-YRS (COVID-19 Yorkshire Rehabilitation Scale) and used it for both research and clinical purposes [84]. It was quickly agreed that, for the purposes of generating comparative research findings across the ten clinics, the C19-YRS should be used at all sites and completed by patients three-monthly. A commercial partner produced an electronic version of this instrument and an app for patient smartphones. The quality improvement collaborative also agreed to ask patients to complete the EUROQOL EQ5D, a widely-used generic health-related quality of life scale [85], in order to facilitate comparisons between long covid and other chronic conditions.
In retrospect, the discussions which led to the formal (and unopposed) adoption of these two measures as a ‘quality’ initiative in clinical care were somewhat aspirational. A review of progress at a subsequent quality improvement meeting revealed considerable variation among clinics, with a wide variety of measures used in different clinics to different degrees. Reasons for this variation were multiple. First, although our patients advisory group were keen that we should gather as much data as possible on the patient experience of this new condition, many clinic patients found the long questionnaires exhausting to complete due to cognitive impairment and fatigue. In addition, while patients were keen to answer questions on symptoms that troubled them, many had limited patience to fill out repeated surveys on symptoms that did not trouble them (“it almost felt as if I’ve not got long COVID because I didn’t feel like I fit the criteria as they were laying it out”—patient SAL001). Staff assisted patients in completing the measures when needed, but this was time-consuming (up to 45 minutes per instrument) and burdensome. In clinics where a high proportion of patients required assistance, staff time was the rate-limiting factor for how many instruments got completed. For some patients, one short instrument was the most that could be asked of them, and the clinician made a judgement on which one would be in their best interests on the day.
The second reason for variation was that the clinical diagnosis and management of particular features, complications and comorbidities of long covid required more nuance than was provided by these relatively generic instruments, and the level of detail sought varied with the specialist interest of the clinic (and the clinician). The modified C19-YRS [86], for example, contained 19 items, of which one asked about sleep quality. But if a patient had sleep difficulties, many clinicians felt that these needed to be documented in more detail—for example using the 8-item Epworth Sleepiness Scale, originally developed for conditions such as narcolepsy and obstructive sleep apnea [87]. The ‘Epworth score’ was essential currency for referrals to some but not all specialist sleep services. Similarly, the C19-YRS had three items relating to anxiety, depression and post-traumatic stress disorder, but in clinics where there was a strong focus on mental health (e.g. when there was a resident psychologist), patients were usually invited to complete more specific tools (e.g. the Patient Health Questionnaire 9 [88], a 9-item questionnaire originally designed to assess severity of depression).
The third reason for variation was custom and practice. Ethnographic visits revealed that paper copies of certain instruments were routinely stacked on clinicians’ desks in outpatient departments and also (in some cases) handed out by administrative staff in waiting areas so that patients could complete them before seeing the clinician. These familiar clinic artefacts tended to be short (one-page) instruments that had a long tradition of use in clinical practice. They were not always fit for purpose. For example, the Nijmegen questionnaire was developed in the 1980s to assess hyperventilation; it was validated against a longer, ‘gold standard’ instrument for that condition [89]. It subsequently became popular in respiratory clinics to diagnose or exclude breathing pattern disorder (a condition in which the normal physiological pattern of breathing becomes replaced with less efficient, shallower breathing [90]), so much so that the researchers who developed the instrument published a paper warning that it had not been validated for this purpose [91]. Whilst a validated 17-item instrument for breathing pattern disorder (the Self-Evaluation of Breathing Questionnaire [92]) does exist, it is not in widespread clinical use. Most clinics in LOCOMOTION used Nijmegen either on all patients (e.g. as part of a comprehensive initial assessment, especially if the service had begun as a respiratory follow-up clinic) or when breathing pattern disorder was suspected.
In sum, the use of outcome measures in long covid clinics was a compromise between standardization and contingency. On the one hand, all clinics accepted the need to use ‘validated’ instruments consistently. On the other hand, there were sometimes good reasons why they deviated from agreed practice, including mismatch between the clinic’s priorities as a research site, its priorities as a clinical service, and the particular clinical needs of a patient; the clinic’s—and the clinician’s—specialist focus; and long-held traditions of using particular instruments with which staff and patients were familiar.
Example quality topic 2: Postural orthostatic tachycardia syndrome (POTS)
Palpitations (common in long covid) and postural orthostatic tachycardia syndrome (POTS, a disproportionate acceleration in heart rate on standing, the assumed cause of palpitations in many long covid patients) was the top priority for quality improvement identified by our patient advisory group. Reflecting discussions and evidence (of various kinds) shared in online patient communities, the group were confident that POTS is common in long covid patients and that many cases remain undetected or misdiagnosed as anxiety. Their request that all long covid patients should be ‘screened’ for POTS prompted a search for, and synthesis of, evidence (which we published in the BMJ [93]). In sum, that evidence was sparse and contested, but, combined with standard practice in specialist clinics (including the dysautonomia clinic mentioned above), broadly supported the judicious use of the NASA Lean Test [94]. This test involves repeated measurements of pulse and blood pressure with the patient first lying and then standing (with shoulders resting against a wall).
The patient advisory group’s request that the NASA Lean Test should be conducted on all patients met with mixed responses from the clinics. Clinic F was keen, since the lead physician had an interest in autonomic dysfunction in chronic fatigue; he had already published a paper on how to adapt the NASA Lean Test for self-assessment at home [95]. Several others, including Clinic C, were opposed. They offered various arguments:
- the test is time-consuming, labor-intensive, and takes up space in the clinic which has an opportunity cost in terms of other potential uses;
- the test is unvalidated and potentially misleading (there is a high incidence of both false negative and false positive results);
- there is no proven treatment for POTS, so there is no point in testing for it;
- it is a specialist test for a specialist condition, so it should be done in a specialist clinic where its benefits and limitations are better understood;
- objective testing does not change clinical management since what we treat is the patient’s symptoms (e.g. by a pragmatic trial of lifestyle measures and medication);
- people with symptoms suggestive of dysautonomia have already been “triaged out” of this clinic (that is, identified in the initial telephone consultation and referred directly to neurology or cardiology);
- POTS is a manifestation of the systemic nature of long covid; it does not need specific treatment but will improve spontaneously as the patient goes through standard interventions such as active pacing, respiratory physiotherapy and sleep hygiene;
- testing everyone, even when asymptomatic, runs counter to the ethos of rehabilitation, which is to “de-medicalize” patients so as to better orient them to their recovery journey.
When pressure was put on clinics to implement the NASA Lean Test on a consecutive sample of patients to resolve a dispute about the incidence of POTS (from “we’ve only seen a handful of people with it since the clinic began” to “POTS is common and often missed”), one clinic (A) withdrew from the sub-study in protest. The tertiary POTS center linked to Clinic J was already running the NASA Lean Test as standard on all patients. The remaining clinics joined in the NASA Lean Test study with varying enthusiasm (clinic D, which operated virtually, passed the work to the referring general practitioner by making this test a precondition for seeing the patient).
Of 277 consecutive patients tested across the eight clinics, 20 (7%) had a positive NASA Lean Test for POTS and a further 28 (10%) a borderline result. Six of 20 patients who met the criteria for POTS on testing had no prior history of orthostatic intolerance. The question of whether this test should be used to ‘screen’ all patients was not answered definitively. But the experience of participating in the study persuaded some sceptics that postural changes in heart rate could be severe in some long covid patients, did not appear to be fully explained by their previously-held theories (e.g. ‘functional’, anxiety, deconditioning), and had likely been missed in some patients. The outcome of this particular quality improvement cycle was thus not a wholescale change in practice (for which the evidence base was weak) but a more subtle increase in clinical awareness, a greater willingness to consider testing for POTS and a greater commitment to contribute to research into this contested condition.
More generally, the POTS audit prompted some clinicians to recognize the value of quality improvement in novel clinical areas. One physician who had initially been adamant that POTS was not seen in his clinic, for example, reflected:
Our clinic population is changing. […] Overall there’s far fewer post-ICU patients with ECMO [extra-corporeal membrane oxygenation] issues and far more long covid from the community, and this is the bit our clinic isn’t doing so well on. We’re doing great on breathing pattern disorder; neuro[logists] are helping us with the brain fogs; our fatigue and occupational advice is ok but some of the dysautonomia symptoms that are more prevalent in the people who were not hospitalized – that’s where we need to improve.
- Respiratory physician, Clinic B
Example quality topic 3: Management of fatigue
Fatigue was the commonest symptom overall and a high priority among both patients and clinicians for quality improvement. It often coexisted with the cluster of neurocognitive symptoms known as brain fog, with both conditions relapsing and remitting in step. Clinicians were keen to systematize fatigue management using a familiar clinical framework oriented around documenting a full clinical history, identifying associated symptoms, excluding or exploring comorbidities and alternative explanations (e.g. poor sleep patterns, depression, menopause, deconditioning), assessing how fatigue affects physical and mental function, implementing a program of physical and cognitive therapy that was sensitive to the patient’s condition and confidence level, and monitoring progress using validated patient-reported outcome measures and symptom diaries.
The underpinning logic of this approach, which broadly reflected World Health Organization guidance [96], was that fatigue and linked cognitive impairment could be a manifestation of many—perhaps interacting—conditions but that a whole-patient (body and mind) rehabilitation program was the cornerstone of management in most cases. Discussion in the quality improvement collaborative focused on issues such as whether fatigue was so severe that it produced safety concerns (e.g. in a person’s job or with childcare), the pros and cons of particular online courses such as yoga, relaxation and mindfulness (many were viewed positively, though the evidence base was considered weak), and the extent to which respiratory physical therapy had a crossover impact on fatigue (systematic reviews suggested that it may do, but these reviews also cautioned that primary studies were sparse, methodologically flawed and heterogeneous [97, 98]). They also debated the strengths and limitations of different fatigue-specific outcome measures, each of which had been developed and validated in a different condition, with varying emphasis on cognitive fatigue, physical fatigue, effect on daily life and motivation. These instruments included the Modified Fatigue Impact Scale; Fatigue Severity Scale [99]; Fatigue Assessment Scale; Functional Assessment Chronic Illness Therapy—Fatigue (FACIT-F) [100]; Work and Social Adjustment Scale [101]; Chalder Fatigue Scale [102]; Visual Analogue Scale—Fatigue [103]; and the EQ5D [85]. In one clinic, three of these scales were used in combination.
Some clinicians advocated melatonin or nutritional supplements (such as vitamin D or folic acid) for fatigue on the grounds that many patients found them helpful and formal placebo-controlled trials were unlikely ever to be conducted. But neurostimulants used in other fatigue-predominant conditions (e.g. brain injury, stroke), which also lacked clinical trial evidence in long covid, were viewed as inappropriate in most patients because of lack of evidence of clear benefit and hypothetical risk of harm (e.g. adverse drug reactions, polypharmacy).
Whilst the patient advisory group were broadly supportive of a whole-patient rehabilitative approach to fatigue, their primary concern was fatiguability, especially post-exertional symptom exacerbation (PESE, also known as ‘crashes’). In these, the patient becomes profoundly fatigued some hours or days after physical or mental exertion, and this state can last for days or even weeks [104]. Patients viewed PESE as a ‘red flag’ symptom which clinicians often missed and sometimes caused. They wanted the quality improvement effort to focus on ensuring that all clinicians were aware of the risks of PESE and acted accordingly. A discussion among patients and clinicians raised a new research hypothesis—that reducing the number of repeated episodes of PESE may improve the natural history of long covid.
These tensions around fatigue management played out differently in different clinics. In Clinic C, patients with fatigue went through a fatigue management program led by the occupational therapist with emphasis on pacing, energy conservation, avoidance of PESE and sleep hygiene. Those without ongoing respiratory symptoms were often discharged back to their general practitioner once they had completed this; there was no consultant follow-up of unresolved fatigue.
In Clinic F, active interdisciplinary management of fatigue was commenced at or near the patient’s first visit, on the grounds that the earlier this began, the more successful it would be. In this clinic, patients were offered a more intensive package: a similar occupational therapy-led fatigue course as those in clinic C, plus input from a dietician to advise on regular balanced meals and caffeine avoidance and a group-based facilitated peer support program which centered on fatigue management. The dietician spoke enthusiastically about how improving diet in longstanding long covid patients often improved fatigue (e.g. because they had often lost muscle mass and tended to snack on convenience food rather than make meals from scratch), though she agreed there was no evidence base from trials to support this approach.
In Clinic D, fatigue was viewed as one manifestation of a whole-patient condition. The lead general practitioner used the metaphor of untangling a skein of wool: “you have to find the end and then gently pull it”. The underlying problem in a fatigued patient, for example, might be an undiagnosed physical condition such as anemia, disturbed sleep, or inadequate pacing. These required (respectively) the chronic fatigue service (comprising an occupational therapist and specialist psychologist and oriented mainly to teaching the techniques of goal-setting and pacing), a ‘tiredness’ work-up (e.g. to exclude anemia or menopause), investigation of poor sleep (which, not uncommonly, was due to obstructive sleep apnea), and exploration of mental health issues.
Pursuing local quality improvement through MDTs
Whilst some long covid patients had ‘textbook’ symptoms and clinical findings, many cases were unique and some were fiendishly complex. One clinician commented that, somewhat paradoxically, ‘easy cases’ were often the post-ICU follow-ups who had resolving chest complications; they tended to do well with a course of respiratory physical therapy and a return-to-work program. Such cases were rarely brought to MDT meetings. ‘Difficult cases’ were patients who had not been hospitalized for their acute illness but presented with a months- or years-long history of multiple symptoms with fatigue typically predominant. Each one was different, as the following example (some details of which have been fictionalized to protect anonymity) illustrates.
The MDT is discussing Mrs Fermah, a 65-year-old homemaker who had covid-19 a year ago. She has had multiple symptoms since, including fluctuating fatigue, brain fog, breathlessness, retrosternal chest pain of burning character, dry cough, croaky voice, intermittent rashes (sometimes on eating), lips going blue, ankle swelling, orthopnea, dizziness with the room spinning which can be triggered by stress, low back pain, aches and pains in the arms and legs and pins and needles in the fingertips, loss of taste and smell, palpitations and dizziness (unclear if postural, but clear association with nausea), headaches on waking, and dry mouth. She is somewhat overweight (body mass index 29) and admits to low mood. Functionally, she is mostly confined to the house and can no longer manage the stairs so has begun to sleep downstairs. She has stumbled once or twice but not fallen. Her social life has ceased and she rarely has the energy to see her grandchildren. Her 70-year-old husband is retired and generally supportive, though he spends most evenings at his club. Comorbidities include glaucoma which is well controlled and overseen by an ophthalmologist, mild club foot (congenital) and stage 1 breast cancer 20 years ago. Various tests, including a chest X-ray, resting and exercise oximetry and a blood panel, were normal except for borderline vitamin D level. Her breathing questionnaire score suggests she does not have breathing pattern disorder. ECG showed first-degree atrioventricular block and left axis deviation. No clinician has witnessed the blue lips. Her current treatment is online group respiratory physical therapy; a home visit is being arranged to assess her climbing stairs. She has declined a psychologist assessment. The consultant asks the nurse who assessed her: “Did you get a feel if this is a POTS-type dizziness or an ENT-type?” She sighs. “Honestly it was hard to tell, bless her.”—Clinic I MDT
This patient’s debilitating symptoms and functional impairments could all be due to long covid, yet ‘evidence-based’ guidance for how to manage her complex suffering does not exist and likely never will exist. The question of which (if any) additional blood or imaging tests to do, in what order of priority, and what interventions to offer the patient will not be definitively answered by consulting clinical trials involving hundreds of patients, since (even if these existed) the decision involves weighing this patient’s history and the multiple factors and uncertainties that are relevant in her case. The knowledge that will help the MDT provide quality care to Mrs Fermah is case-based knowledge—accumulated clinical experience and wisdom from managing and deliberating on multiple similar cases. Such learning was often evident in the MDTs, whose experienced members were skillful at “finding the end of the tangled ball of wool and pulling it gently” as the GP in the previous section put it. We consider case-based knowledge further in the Discussion.