Improving Quality in Adult Long Covid Services: Findings from the LOCOMOTION Quality Improvement Collaborative, 2024, Darbyshire, Greenhalgh+

Improving Quality in Adult Long Covid Services: Findings from the LOCOMOTION Quality Improvement Collaborative
Darbyshire; Greenhalgh; Bakerly; Balasundaram; Baley; Ball; Bullock; Cooper; Davies; De Kock; Echevarria; Elkin; Evans; Falope; Flynn; Fraser; Halpin; Jones; Lardner; Lee; Sivan

The protracted form of COVID-19 known as ‘long covid’ was first described in 2020. Its symptoms, course and prognosis vary widely; some patients have a multi-system, disabling and prolonged illness. In 2021, ring-fenced funding was provided to establish 90 long covid clinics in England; some clinics were also established in Scotland and Wales.

The NIHR-funded LOCOMOTION project implemented a UK-wide quality improvement collaborative involving ten of these clinics, which ran from 2021 to 2023. At regular online meetings held approximately 8-weekly, participants prioritized topics, discussed research evidence and guidelines, and presented exemplar case histories and clinic audits. A patient advisory group also held a priority-setting exercise, participated in quality meetings and undertook a service evaluation audit.

The goal of successive quality improvement cycles aimed at changing practice to align with evidence was sometimes hard to achieve because definitive evidence did not yet exist in this new condition; many patients had comorbidities; and clinics were practically constrained in various ways. Nevertheless, much progress was made and a series of ‘best practice’ guides was produced, covering general assessment and management; breathing difficulties; orthostatic tachycardia and other autonomic symptoms; fatigue and cognitive impairment; and vocational rehabilitation. This paper summarises key findings with the front-line clinician in mind.


Link | PDF (Clinical Medicine)

 

[13] is ME/CFS and Post-Exertional Malaise among Patients with Long COVID (2022, Neurology International)

 

TOPIC 3: MONITORING

Patients’ progress should by systematically monitored using evidence-based measures

3а. Select and standardize 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 demoralizing.

A disease-specific PROM for long covid, C19-YRS, had already been produced and validated 2134; 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

Research from one LOCOMOTION site 36 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

ТОРІС 7: VOCATIONAL REHABILITATION

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) synthesized evidence to produce a guide and infographic41.

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Key controversies in relation to fatigue and cognitive impairment (which tended to co-occur and co-vary) included how far to investigate to exclude differential diagnoses, how to handle requests for unproven therapies (e.g. hyperbaric oxygen, vagus nerve stimulation), and how best to manage fluctuations and avoid the well-described “crashes” that can occur after physical, mental or emotional exertion33 37 . Even at the outset of our study, many therapists were already rejecting the ‘graded exercise’ approach (in which patients were encouraged to steadily increase their exercise levels regardless of symptoms) and advocating the ‘3Ps’: prioritising, planning and pacing 47 ; by the end of the study period this symptom-guided approach was routine in all clinics.

 

The investigation and management of palpitations and dizziness in long covid patients was another controversial clinical topic. Some clinicians agreed with patient advisory group that postural orthostatic tachycardia syndrome (POTS, defined as postural increase in heart rate without orthostatic hypotension and indicating possible dysautonomia) was likely being missed, while others felt that dysautonomia was rare in their clinics and overdiagnosed.

A prospective prevalence study using the NASA Lean Test confirmed the important finding that POTS is not uncommon in long covid and sometimes presents without typical symptoms of orthostatic intolerance 40. Additional controversies included when and for whom to prescribe ‘off label’ medication […] and those in whom it was hard to tell which was the underlying issue—tachycardia or anxiety. Research evidence provided few clues on these questions and clinical views were polarised. Nevertheless, discussion across participating clinics helped map the state of knowledge, ambiguity and uncertainty in this contested topic.

 

On Bluesky —

It's very encouraging to see that participating clinics stopped using graded exercise and switched to pacing instead. Do you think this marks a shift in understanding the difference between PEM and deconditioning?

TG: Definitely. It was a HUGE deal. Unlearn-relearn

https://bsky.app/profile/trishgreenhalgh.bsky.social/post/3l2ha2ihlbt2u

 

Something that wouldn't have had to happen if the ME/CFS community was listened to.

 

'We have no evidence but we are doing a jolly good job anyway'. Seems to be the message.

 

The approach to the patient is now so holistic that it includes olfactory training:

'Try smelling this marmalade - that is what we call marmalade smell.'
'Now let's move on to bananas'...

 

So they started with wrong ideas, and slowly, begrudgingly, shifted towards accepting what we said for decades, but without acknowledging that or being bothered by it. So those clinics are still largely useless, but do slightly less harm by being stuck on half the old paradigm, with zero recognition that this has been a major controversy for decades that, it turns out, the professionals were on the wrong side of. But they make zero self-reflection about it. I guess self-awareness is not expected here.

This bothers me, and shows how they're paying little attention to what the patients are reporting:

That's not gradual with exception. In fact it's rarely gradual. It's generally chaotic, non-linear. It's the PEM/PESE that is the natural history in most.

So big picture, the professionals are slowly getting to the point where the LC patient community was by about Summer of 2020, and barely at that. This is terrible. Still stuck on the idea of rehabilitation, as if the issue with pacing is being coached into doing it correctly. Can't do it unless some therapist gives you a graphic with generic concepts.

We could have been there in the early 90s, but... things happened. Most MDs still advise to exercise, so this limited change in attitudes in a few clinics is hardly relevant. This is one area in one part of the world, it still amounts to a massive failure.

Basically this is similar to Wessely's comments on the Desert Island radio show (IIRC), where he was asked to summarize his career and pretty much all he could come up with was "well, first we thought it was depression, then we found out it isn't", but the vast majority of MDs believe so anyway, and I can't imagine that he would ever correct another MD who said so. So, basically: "we took a step backward, then we took a half step forward", and call it progress.

It all falls so short of what is expected of professionals. Those clinics are still largely considered useless.

 

Wow

the word/phrase ‘unlearn’ has been used


That is so significant

I tend to talk of the need for ‘deprogramming’ eg for behaviourists, BACME, old clinic staff … and so on down the line

particularly noting it is needed before anything can be done - whether that is that there is a ‘fit’ to be trained in the right stuff for a role in me/cfs or whether there is no fit between personal qualities/style and skills and that. You can’t have them going into their new area like other wards claiming to be ‘an expert’ based on old stuff they haven’t been deprogrammed from

 

That’s a classic example of a treatment measure where confirmation bias will be implicit in measures

you can’t complete the training if your medical issue hasn’t been fixed. I assume as per usual no one is looking at drop outs

and as you say many will look at someone offering ‘that bit’ fir that problem and think of all the parts that needed a paid medic and scientist working on it ….. why do they keep offering the bits people probably would rather do themselves and do well

they only sign up in the vain hope someone would be unbiased and if/when it doesn’t worked they would act as a witness eg to gateway ‘other things’

but welcome to our world where I bet said therapist ‘can’t see that’ just non-compliant as the only option

 

contending with the inflated ego's of some people never goes well .Unfortunately many academics and medical professionals never reflect on the possibility of being wrong. Thank you again for doing so much for our community.

 

oh no

that's disappointing. I'm now reading your post, but to me it reads as a plea to say could you now persuade those Royal Colleges who released statements undermining the new guidelines

I'm not 'with it' enough on these things to know how her mind works, and how quickly she is reading through things so has just miscategorised this thinking it said something else?

Or whether others know of her 'innate rules' she might be playing by as to what she thinks 'trolling' is