How well can we measure chronic pain impact in existing longitudinal cohort studies? Lessons learned

Diego Vitali, Amanda C de C Williams, John McBeth, Matthew Nunes

Research output: Contribution to journalArticlepeer-review

Abstract

Multiple large longitudinal cohorts provide opportunities to address questions about predictors of pain and pain trajectories, even when not anticipated in design of the historical databases. This focus article uses two empirical examples to illustrate the processes of assessing the measurement properties of data from large cohort studies to answer questions about pain. In both examples, data were screened to select candidate variables that captured the impact of chronic pain on self-care activities, productivity and social activities. We describe a series of steps to select candidate items and evaluate their psychometric characteristics in relation to the measurement of pain impact proposed. In UK Biobank, a general lack of internal consistency of variables selected prevented the identification of a satisfactory measurement model, with lessons for the measurement of chronic pain impact. In the English Longitudinal Study of Ageing, a measurement model for chronic pain impact was identified, albeit limited to capturing the impact of pain on self-care and productivity but lacking coverage related to social participation. In conjunction with its supplementary material, this focus article aims to encourage exploration of these valuable prospectively collected data; to support researchers to make explicit the relationships between items in the databases and constructs of interest in pain research; and to use empirical methods to estimate the possible biases in these variables.

Perspective: This focus article outlines a theory-driven approach for fitting new measurement models to data from large cohort studies, and evaluating their psychometric properties. This aims to help researchers develop an empirical understanding of the gains and limitations connected with the process of re-purposing the data stored in these datasets.
Original languageEnglish
Article number104678
JournalJournal of Pain
Early online date17 Sept 2024
DOIs
Publication statusE-pub ahead of print - 17 Sept 2024

Data Availability Statement

This study makes use of data from the UK Biobank (project ID 98481), which was approved by the National Information Governance Board for Health and Social Care and the National Health Service North West Multicentre Research Ethics Committee (Ref: 06/MRE08/65). All participants gave informed consent, and the study was approved by the Research Ethics Committee (No: 11/NW/0382). The English Longitudinal Study of Ageing was developed by a team of researchers based at University College London, NatCen Social Research, the Institute for Fiscal Studies, the University of Manchester and the University of East Anglia. The data were collected by NatCen Social Research. Informed consent was sought from all the ELSA participants. Both UKB and ELSA datasets have established data sharing processes. ELSA anonymised datasets with corresponding documentation can be downloaded for use by researchers from the UK Data Service. UKB is globally accessible to approved researchers who are undertaking health-related research that’s in the public interest. We have detailed the processes for each dataset in the supplementary file “Suppl.UKB.pdf”, ”Suppl.ELSA_a.pdf”, and ”Suppl.ELSA_b.pdf”, and in a public github repository https://github.com/UCL/Pain.Impact.Measures

Acknowledgements

The authors gratefully acknowledge the public contributors who shared their time, knowledge, and experiences enabling mutual learning and collaboration.

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