Ravn
Senior Member (Voting Rights)
@rvallee posted this in another thread but this BMJ opinion piece is also relevant here.
Using condition specific patient reported outcome measures for long covid
https://www.bmj.com/content/376/bmj.o257
Using condition specific patient reported outcome measures for long covid
https://www.bmj.com/content/376/bmj.o257
Currently long covid services are using PROMs developed for other conditions such respiratory conditions (Medical Research Council Dyspnea Scale), anxiety disorder (Generalised Anxiety Disorder Assessment) and depression (Patient Health Questionnaire)
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However, this approach has several limitations. Such measures, in our experience, are cognitively burdensome to long covid patients, do not comprehensively capture the spectrum of symptoms, cannot directly engage with the underlying biological mechanisms, and are reported not to be meaningful by patients, families, and clinicians.
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There is the added danger of misleading management, for example individuals scoring highly on anxiety scores may get diverted to psychological services when their anxiety is being driven by underlying dysautonomia (increased heart rate) which needs medical optimisation.
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Patient groups—including under-served populations—need to be involved in the development, selection, and co-design of systems to implement long covid specific PROMs in care pathways.8 There needs to be early engagement with other key stakeholders—clinicians, health informatics, governance, researchers, and service commissioners.