Lived Experiences of New‐Onset Long Covid Pain and Its Impact on Health‐Related Quality of Life. A Scoping Review of Current Evidence

TL;DR

This review explores how new-onset pain from Long Covid affects people's quality of life and highlights gaps in understanding and managing this issue.

Contribution

The study identifies a lack of qualitative research on lived experiences of new-onset Long Covid pain and emphasizes the need for patient involvement in future research.

Findings

69.5% of Long Covid patients reported new-onset pain, with musculoskeletal pain being most common.

Pain impacts physical, psychological, and social well-being, and is often treated with medications.

There is a significant gap in research on pediatric experiences of new-onset Long Covid pain.

Abstract

Long Covid (LC) is a multisystem condition that can cause persistent symptoms such as breathlessness, fatigue, cognitive problems and pain, with major effects on individuals and healthcare systems. Globally, nearly 400 million people have been affected. New‐onset pain is among the most commonly reported symptoms and may develop into chronic pain, contributing to reduced health‐related quality of life (HRQoL) and highlighting the need for appropriate care. Given its global prevalence, exploring how people experience new‐onset LC pain and how it impacts their lives can help improve pain management and support services.

A mixed‐methods scoping review was conducted following the Joanna Briggs Institute (JBI) guidance and the Preferred Reporting Items for Systematic Reviews Extension for Scoping Reviews (PRISMA‐ScR). The review mapped and synthesised evidence from eligible primary research articles (quantitative, qualitative and mixed‐methods) published in English between December 2019 and June 2024. Seven studies using cross‐sectional, case–control and observational designs (n = 30 to 2507 participants) were included, with data collected from Europe and Asia.

While qualitative data on lived experience were limited, 69.5% of LC patients reported new‐onset pain, most commonly musculoskeletal (MSK) pain (73.2%). Psychological symptoms such as post‐traumatic stress disorder (PTSD) were also reported (38%). Pain medications were widely used. Findings suggest that new‐onset LC pain affects physical, psychological and social well‐being. No studies involving children or adolescents were identified, indicating a gap in the evidence on paediatric experiences of new‐onset LC pain.

This review highlights major gaps in the literature, especially the lack of qualitative research on how people experience new‐onset LC pain. Future research should explore these experiences in depth, with involvement from patients and the public, to inform the development of appropriate treatment and support strategies.

During the review process, opportunities to involve PPI were not fully explored due to limited awareness of how to support meaningful involvement in a scoping review, alongside time and resource constraints. Such involvement could have helped shape the review question, refine the search terms and interpret the findings in ways that better reflect lived experience. This is acknowledged as both a limitation and a learning point. PPI will be actively embedded in the next phases of the research.

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