Table 2.

Prioritised topics in the LOCOMOTION collaborative along with goals, objectives, approach and outcomes.

Topic	Agreed goal	Specific objectives and approach	Outcome
TOPIC 1: ACCESS	Everyone with long covid should be seen promptly. Those needing specialist assessment should be able to access it in a timely manner	1a. Reduce waiting lists by increasing clinic slots, streamlining pathways and addressing bottlenecks. 1b. Prioritise the sickest patients by developing and applying evidence-based referral criteria. 1c. Address inequities of access through targeted approaches for specific groups. 1d. Inform and support GPs so that they are confident to see and manage some long covid patients (see 2c).	Waiting time for first appointment was reduced from months to weeks in all sites, though this was partly due to reduction in incidence of new cases. Local clinics refined their referral criteria, pathways and prerequisite work-ups (e.g. required blood tests), but standardisation across sites proved difficult. Site-based initiatives to improve equity of access led to increased referrals for some but not all disadvantaged groups (see examples in text).
TOPIC 2: ASSESSMENT AND CARE PLANNING	Everyone with long covid should have a thorough, holistic initial assessment, including tests as needed to exclude serious complications	2a. Define the core elements of a holistic clinical assessment and ensure patients receive relevant elements as needed (usually, via multidisciplinary team care). 2b. Define and implement protocols for ‘red flag’ symptoms (e.g. indicating thrombotic complications), including key investigations and timely referral. 2c. Inform and support GPs by producing and disseminating guidance and an infographic on basic long covid assessment and management.	A multidisciplinary author team (including lived experience experts) synthesised evidence from research, current practice and patient experience, producing a guide and infographic.33 It included specific management advice for ‘red flag’ symptoms and advice on symptom control. The guide was widely accessed and disseminated among GPs and in patient online networks.
TOPIC 3: MONITORING	Patients’ progress should by systematically monitored using evidence-based measures	3a. Select and standardise patient-reported outcome measures (PROMs) for use in long covid clinics, taking account of what outcomes matter to patients. 3b. Address burden of monitoring, acknowledging that long covid patients may find repeated and lengthy questionnaires exhausting and demoralising.	A disease-specific PROM for long covid, C19-YRS, had already been produced and validated21,34; the collaborative and patient advisory group endorsed this measure for use across the LOCOMOTION sites. Further validation of C19-YRSm was undertaken.35 Uptake and use of C19-YRS and other validated PROMs (e.g. EQ-5D-5L) in participating clinics was limited by staff capacity and patients’ (fluctuating) capability and energy.
TOPIC 4: FATIGUE and TOPIC 5: COGNITIVE IMPAIRMENT	Management of fatigue and cognitive impairment (which often coexist) should be evidence-based, guided by symptoms and functional capacity, and attentive to fluctuations	5a. Identify and summarise research evidence on fatigue and cognitive impairment in long covid, including ‘crashes’, also known as post-exertional symptom exacerbation (PESE) and post-exertional malaise (PEM). 5b. Align clinic protocols with evidence and ensure all clinicians are aware and following them. 5c. Inform and support GPs by producing a guide and infographic on this topic.	Research from one LOCOMOTION site36 affirmed patients’ and therapists’ impressions that symptom-guided pacing activities (rather than ‘graded exercise’) can reduce episodes of PESE/PEM. Case discussions and joint meetings with patient lived-experience advisors underscored the importance of symptom-guided management and helped routinise this approach. A multidisciplinary team produced a guide and infographic on cognitive impairment.37
TOPIC 5: BREATHING DIFFICULTIES	All patients with continuing respiratory symptoms should be managed and monitored according to evidence-based guidance	5a. Identify and summarise research evidence and guidelines on respiratory complications of COVID-19. 5b. Align clinic protocols with evidence and ensure all clinicians are aware and following them. 5c. Inform and support GPs by producing a guide and infographic on this topic.	Discussion of case vignettes along with (sparse) research evidence improved understanding of how best to support patients with breathing difficulties. A synthesis and guide (with infographic) was produced, with special emphasis on the commonest respiratory manifestation of long covid, breathing pattern disorder.38
TOPIC 6: ORTHOSTATIC INTOLERANCE AND DYSAUTONOMIA	All patients with orthostatic intolerance and other manifestations of dysautonomia should be identified and managed in accordance with evidence	7a. Identity and summarise research evidence on orthostatic intolerance and dysautonomia in long covid. 7b. Assess the prevalence of orthostatic intolerance by prospectively testing all patients attending long covid clinics. 7c. Align clinic protocols with evidence and ensure all clinicians are aware and following them. 7d. Inform and support GPs by producing a guide and infographic on this topic.	A multidisciplinary author team synthesised evidence from research, current practice and patient experience, producing a guide and infographic.39 A prospective study of consecutive patients (n = 277) across 8 of the 10 LOCOMOTION clinics found the prevalence of PoTS to be 7% and orthostatic hypotension to be 8%.40
TOPIC 7: VOCATIONAL REHABILITATION	All long covid patients should receive evidence-based support to return to work if appropriate	8a. Identify and summarise research evidence on how to support long covid patients to return to work. 8b. Align clinic protocols with evidence and ensure all clinicians are aware and following them. 8c. Inform and support GPs by producing a guide and infographic on this topic	Discussion of cases revealed multiple challenges in vocational rehabilitation (see main text). A multidisciplinary author team, including two lived-experience experts (one an occupational health physician) synthesised evidence to produce a guide and infographic.41

PAG, patient advisory group. ITU, intensive care unit.