Understanding the lived experience of chronic pain: A systematic review and synthesis of qualitative evidence syntheses

Abstract

Background Although multiple measures of the causes and consequences of chronic non-cancer pain (CNCP) are available and can inform pain management, no quantitative summary of these measures can describe the meaning of pain for a patient. The lived experience of pain tends to be a blind spot in pain management. This study aimed to: (1) integrate qualitative research investigating the lived experience of a range of CNCP conditions; (2) establish common qualitative themes in CNCP experience; and (3) evaluate the relevance of our results through a survey questionnaire based on these themes, administered across the United Kingdom. Methods Four bibliographic databases were searched from inception to February 2021 to identify Qualitative Evidence Syntheses (QES) that investigated the lived experience of CNCP and its impact on everyday life and activities. Themes and trends were derived by thematic qualitative analysis in collaboration with two patient and public involvement representatives who co-created twenty survey statements. The survey was developed for testing the QES themes for validity in people living with pain. Results The research team identified and screened 1323 titles, and considered 86 abstracts, including 20 in the final review. Eight themes were developed from the study findings: (1) my pain gives rise to negative emotions; (2) changes to my life and to myself; (3) adapting to my new normal; (4) effects of my pain management strategies; (5) hiding and showing my pain; (6) medically explaining my pain; (7) relationships to those around me; and (8) working while in pain. Each theme gave rise to one or two survey questions. The survey was shared with members of the UK pain community over a 2-week period in November 2021, and was completed by 1219 people, largely confirming the above themes. Conclusion/Implications This study provides a validated summary of the lived experience of CNCP. It highlights the adverse nature, complications, and consequences of living with CNCP in the UK and the multiple shortcomings in the ways in which pain is addressed by others in the UK. Our findings are consistent with published meta-ethnographies on chronic non-malignant musculoskeletal pain and chronic low-back pain. Despite the underrepresentation of qualitative research in the pain literature compared to quantitative approaches, for understanding the complexity of the lived experience of pain, qualitative research is an essential tool.

Data-Driven Identification of Potentially Successful Intervention Implementations Using 5 Years of Opioid Prescribing Data: Retrospective Database Study

“…The new national policy for the optimization and personalization of various addiction-forming medications, including opioids, lacks practical detail on implementation for GPs to reduce opioid prescribing [ 24 , 25 ]. Different innovations are being implemented in the United Kingdom [ 26 - 28 ], and these strategies are associated with observable changes in prescribing practices. However, some may succeed in 1 area but not another.…”

“…GPs undertake complex decision-making on opioid prescribing, balancing benefits and harms [ 29 ], but struggle with limited time and alternatives for chronic pain [ 30 , 31 ]. Further practical guidelines for GPs on appropriate prescribing could help with tapering and effective communication strategies [ 26 , 30 ]. Tools such as that demonstrated in this paper, highlighting positive changes, could help to inspire and motivate practices or regions to make changes, while also giving them other organizations to contact about how changes have been achieved.…”