What is quality in long covid care? Lessons from a national quality improvement collaborative and multi-site ethnography, 2024, Greenhalgh et al.

What is quality in long covid care? Lessons from a national quality improvement collaborative and multi-site ethnography
Greenhalgh, Trisha; Darbyshire, Julie L.; Lee, Cassie; Ladds, Emma; Ceolta-Smith, Jenny

Long covid (post covid-19 condition) is a complex condition with diverse manifestations, uncertain prognosis and wide variation in current approaches to management. There have been calls for formal quality standards to reduce a so-called “postcode lottery” of care. The original aim of this study—to examine the nature of quality in long covid care and reduce unwarranted variation in services—evolved to focus on examining the reasons why standardizing care was so challenging in this condition.

In 2021–2023, we ran a quality improvement collaborative across 10 UK sites. The dataset reported here was mostly but not entirely qualitative. It included data on the origins and current context of each clinic, interviews with staff and patients, and ethnographic observations at 13 clinics (50 consultations) and 45 multidisciplinary team (MDT) meetings (244 patient cases). Data collection and analysis were informed by relevant lenses from clinical care (e.g. evidence-based guidelines), improvement science (e.g. quality improvement cycles) and philosophy of knowledge. Participating clinics made progress towards standardizing assessment and management in some topics; some variation remained but this could usually be explained. Clinics had different histories and path dependencies, occupied a different place in their healthcare ecosystem and served a varied caseload including a high proportion of patients with comorbidities.

A key mechanism for achieving high-quality long covid care was when local MDTs deliberated on unusual, complex or challenging cases for which evidence-based guidelines provided no easy answers. In such cases, collective learning occurred through idiographic (case-based) reasoning, in which practitioners build lessons from the particular to the general. This contrasts with the nomothetic reasoning implicit in evidence-based guidelines, in which reasoning is assumed to go from the general (e.g. findings of clinical trials) to the particular (management of individual patients). Not all variation in long covid services is unwarranted. Largely because long covid’s manifestations are so varied and comorbidities common, generic “evidence-based” standards require much individual adaptation. In this complex condition, quality improvement resources may be productively spent supporting MDTs to optimise their case-based learning through interdisciplinary discussion.

Quality assessment of a long covid service should include review of a sample of individual cases to assess how guidelines have been interpreted and personalized to meet patients’ unique needs.

NCT05057260, ISRCTN15022307.

Link | PDF (BMC Medicine) [Open Access]

 

Useless navel-gazing. The only requirement here is effectiveness, because it encompasses everything that matters. And of course not a single LC clinic is effective at anything, making variations pointless to focus on. This is all by MDs for MDs, writing their own narratives and describing what they do, oblivious that none of it meets basic competence standards.

Discussions between professionals are especially irrelevant if they are of this nature:

There is way too much useless talk about PT to "re-learn" breathing patterns, a meme that somehow hasn't died yet. Good grief they love this idea that people just aren't "breathing right".

Everything, as usual, is around rehabilitation, entirely oblivious that it doesn't apply here, that it's not effective. But all that's lost if all they do is talk among themselves and ignore the only thing that should matter: patient outcomes. Which they aren't influencing one bit. Everything is 'holistic' and 'whole-person' and other meaningless buzzwords.

This is such a huge red flag:

Discussions from patients do not reflect that. More than anything they mention how the services are not accessible, with long waits, and most patients never get referred to. This is abject failure, but it's all performative so I guess they don't care about that.

As expected from Greenhalgh, no mention of ME/CFS (outside of noting that one service in Scotland refers to it), even though there is discussion of PESE (no PEM, just PESE). Clinicians are oblivious to it, it's only patients who raise it:

Hey it's not as this had been some very controversial issue she has long been aware of, lasting for decades in the country she is evaluating this.

This is a bit like an after-action report following a disaster that can't seem to find anything wrong and finds it acceptable that things should continue roughly the same. Useless, pointless self-congratulatory navel-gazing. Or like some political whitewashing report that is immediately shelved because everyone knows the recommendations are just ass-covering anyway.

It feels like a program:
10 Learn nothing
20 Goto 10

 

I respectfully disagree.

TW: I started to hyperventilate when I was turning blue and pretty much dying with pneumonia and double pleurisy 16 years ago, and the switch in my brain that says "you can breath normally now" never switched back on. I proceeded to over breathe for five years, until I met a very lovely physio who explained hyperventilation syndrome, and taught me to re train my breathing to breathe properly again. I still do daily breathing physio and it makes a significant difference for me and my lung issues, as I live with dysfunctional breathing (not fun outside of a limited temperature window), asthma and chronic lung and chest pain. Big fan of respiratory physios - I've seen three and they were all super helpful.

I thought I was being fobbed off with the respiratory equivalent of anxiety and hypochondria until I saw the LC clinic and went through their rehab course, which made it clear that this was not the patient's fault. That was actually really helpful for me, personally.

My experience of my LC clinic has been a world away from my experience of the ME clinic. No, there is still no treatment, and no it's not perfect, but they are a lot more understanding that none of this is ok, none of it is the patient not trying hard enough. They all try and get me to do less. The people I deal at my local clinic have been brilliant, in their areas, and have gone above and beyond. If I had seen them 16 years ago, my life would have been very different - I would still have ME and LC but I might not be borderline severe.

Full disclosure, I know Jenny, one of the co-authors, who has LC and I work with her on occasion on consultation responses to the DWP.

 

That would be a different issue and it seems appropriate here. It's a very rare problem with LC, where the problem usually breathlessness/shortness of breath and this belief about "dysfunctional breathing" is needlessly applied. I've seen that so often. It probably applies more to hospitalized patients, especially after ventilation, which are a relatively small number and one of the only things that can easily be checked and, hopefully, go unquestioned.