Management expert Peter Drucker’s famous words “if you can’t measure it, you can’t manage it” holds good for post-covid syndrome, or long covid, which affects an estimated two million individuals in the UK 1 and extrapolated prevalence data suggests more than 50 million individuals may be affected worldwide.2 Long covid is a multisystem condition with over 200 symptoms reported across most of the organ systems, often with a chronic fluctuating pattern of presentation.3 With up to 30% of covid-19 health burden being related to covid induced disability, long covid presents substantial challenges for healthcare systems worldwide.4 Management of this complex syndrome, in part, requires new integrated long covid services with expertise drawn from a range of specialists across disciplines from both primary and secondary care.56 Healthcare services globally are investing in these new pathways of care, but there are no agreed measurement metrics yet to comprehensively capture patient experience or the effectiveness of treatments, partly due to lack of clear biomarkers for the condition.
Patient reported outcome measures (PROMs) are questionnaire tools to ascertain patients’ views of their symptoms, their functional status, and their health-related quality of life.7 PROM use in other routine clinical contexts have been shown to facilitate communication, engage patients in their care, tailor care to individual patients’ needs, and show value for money for those investing in the services.89 Clinical outcome assessments should include clinically important concepts that define the disease in the target population, assess the impact of disease, and reflect the lived experience of those with the condition. Given the large scale, relative novelty, and multifariousness of long covid syndrome, coupled with shortcomings in understanding viral-onset illness, it is unsurprising that standardised assessments of functioning, disability, and health are lacking.1011
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) and a range of other symptom-specific PROMs that have not yet been validated for use with long covid. 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. Using a range of symptom specific measures makes it challenging to repeat the measures frequently to capture day by day fluctuations and are difficult to implement in busy services overburdened with managing such a large caseload of patients. 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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Source: Sivan M, Wright S, Hughes S, Calvert M. Using condition specific patient reported outcome measures for long covid. BMJ. 2022 Jan 28;376:o257. doi: 10.1136/bmj.o257. PMID: 35091425. https://www.bmj.com/content/376/bmj.o257 (Full text)