Patients Help Develop Symptom-Burden Questionnaire for Long COVID

NEW YORK (Reuters Health) – Researchers have developed and validated a symptom-burden questionnaire for long COVID, or SBQ-LC, with extensive input from patients suffering from the condition.

The questionnaire can be used to evaluate the impact of interventions in clinical trials and inform best practice in clinical management, Dr. Sarah Hughes of the University of Birmingham, in the UK, and colleagues report in The BMJ.

Millions of people around the world are currently living with long COVID or post-COVID-19 syndrome and cases will continue to rise as more people become infected with SARS-CoV-2.

Long COVID is a novel, multisystem condition with considerable and varied symptom burden that often has a negative impact on quality of life and an individual’s ability to work.

Owing to a lack of patient-reported outcome measures specific to long COVID, researchers and clinicians have turned to “bespoke surveys, generic patient-reported outcome measures, or symptom burden measures” validated in other diseases to gauge symptom burden from long COVID, the researchers point out.

With the SBQ-LC they developed (https://bit.ly/38GhUVz), patients rate their symptom burden during the past week using a dichotomous or four-point rating scale.

Each scale covers a different symptom domain and returns a summed raw score that can be transformed to a linear (0-100) score, with higher scores representing higher symptom burden.

“Rigorous content validity testing provided evidence of SBQ-LC’s relevance, comprehensiveness, comprehensibility, and acceptability,” the authors report.

Involving adults with long COVID in all phases of the study (development, refinement, and validation) “ensured patients’ voices were embodied in SBQ-LC’s items,” they note

Involving the target population is particularly important in the context of long COVID where the evidence base is “rapidly evolving and affected individuals have reported experiences of stigma and a lack of acknowledgement from the medical community about the breadth and nature of their symptoms,” the researchers say.

SBQ-LC can be adapted to construct short forms, profile tools, or computer adaptive tests.

“If SBQ-LC is used in a clinical trial, symptom data collected remotely could provide valuable information on the safety, efficacy, and tolerability of new interventions for long COVID. If used within routine care, SBQ-LC has potential to facilitate patient-clinician conversations, guide treatment decision making, and facilitate referrals to specialist services,” they add.

The research had no commercial funding.

SOURCE: https://bit.ly/3ORpOvT The BMJ, online April 27, 2022.

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