Egle Barilaite, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London, London, United KingdomFollow
Harry Watson, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London, London, United KingdomFollow
Mevhibe B. Hocaoglu, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London, London, United KingdomFollow

quality of life; COVID-19; patient-centered care

Purpose

Patient-reported outcome measures (PROMs) are used in individuals experiencing long-term effects from COVID-19 infection, or Long COVID, to evaluate the quality of life and functional status of these individuals. However, little is known about which PROMs are being utilised and the psychometric properties of these PROMs. Our purpose was thus to explore which PROMs are used in Long COVID patients and to discuss the psychometric properties of the PROMs.

Methods

For this rapid review, a systematic literature search was performed in the PubMed, Embase, and CINAHL databases. The found studies were screened using the PRISMA flowchart. We then performed study quality appraisal and assessed the psychometric properties of the found PROMs.

Results

Per the systematic literature search and after removal of duplicates, 157 publications were identified for individual screening. After screening and eligibility assessment, 74 articles were selected for our review. In total, 74 PROMs were used and primarily comprised quality of life, fatigue, breathlessness, mental health, and smell/taste issues in COVID “long haulers.” Five studies used newly developed, COVID-19-specific PROMs. We assessed the psychometric properties of the 10 most-used PROMs. The majority were found to be reliable and valid instruments. EQ-5D-5L was the most popular and highly rated PROM.

Conclusions

We assessed PROMs used in Long COVID patients and evaluated their psychometric properties. EQ-5D-5L was the most favourably rated PROM. PROMs addressing mental health issues are crucial in managing anxiety and depression in Long COVID patients. New COVID-specific PROMs assess functional status and smell/taste perception and show great utilisation potential in olfactory training at COVID smell clinics. However, many reviewed PROMs currently lack sufficient analysis of their psychometric properties. Therefore, future research needs to examine these measures. (J Patient Cent Res Rev. 2024;11:36-50.)

Barilaite E, Watson H, Hocaoglu MB. Understanding patient-reported outcome measures used in adult survivors experiencing long-term effects after COVID-19 infection: a rapid review. J Patient Cent Res Rev. 2024;11:36-50.

March 6th, 2023

August 22nd, 2023