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Are you better? A multi-centre study of patient-defined recovery from Complex Regional Pain Syndrome

Harden, R. N.; Llewellyn, Alison; McCabe, Candida; Hibberd, Yvettte; White, Paul; Davies, Lindsay; Marinus, Johan; Perez, Roberto; Thomassen, Ilona; Brunner, Florian; Sontheim, Carol; Birklein, Frank; Schlereth, Tanya; Goebel, Andreas; Haigh, Richard; Connett, Robyn; Maihofner, Christian; Knudsen, Lone; Zyluk, Andrzej; Shulman, David; Small, Helen; Gobeil, Francois; Moskovitz, Peter

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Authors

R. N. Harden

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Alison Llewellyn Alison.Llewellyn@uwe.ac.uk
Associate Professor in Clinical Research

Candy McCabe Candy.Mccabe@uwe.ac.uk
Professor of Clinical Research and Practice

Yvettte Hibberd

Paul White Paul.White@uwe.ac.uk
Professor in Applied Statistics

Lindsay Davies

Johan Marinus

Roberto Perez

Ilona Thomassen

Florian Brunner

Carol Sontheim

Frank Birklein

Tanya Schlereth

Andreas Goebel

Richard Haigh

Robyn Connett

Christian Maihofner

Lone Knudsen

Andrzej Zyluk

David Shulman

Helen Small

Francois Gobeil

Peter Moskovitz



Abstract

© 2017 European Pain Federation - EFIC® Background: Complex Regional Pain Syndrome (CRPS) symptoms can significantly differ between patients, fluctuate over time, disappear or persist. This leads to problems in defining recovery and in evaluating the efficacy of therapeutic interventions. Objectives: To define recovery from the patients’ perspective and better understand their priorities for treatment approaches. Methods: Establishing an international consortium, we used a 2-Round Delphi-based study in eight countries across Europe and North America. Participants ≥18years who met, or had met, Budapest clinical criteria were included. Round 1 participants completed the statement: ‘I would/do consider myself recovered from CRPS if/because…’ alongside demographic and health questionnaires. Data were thematically organised and represented as 62 statements, from which participants identified and ranked their recovery priorities in Round 2. Results: Round 1 (N=347, 80% female, 91% non-recovered) dominant ICF themes were: activities of daily living; bodily functions; external factors; participation and personal factors. The top five priority statements in Round 2 (N=252) were: no longer having (1) CRPS-related pain, (2) generalised pain and discomfort, (3) restricted range of movement, (4) need for medication, (5) stiffness in the affected limb. With very few exceptions, priorities were consistent, irrespective of patient demographics/geography. Symptoms affecting daily activities were among those most frequently reported. Conclusions: Our data showed a small number of themes are of highest importance to CRPS patients’ definition of recovery. Patients want their pain, movement restriction and reliance on medication to be addressed, above all other factors. These factors should therefore be foremost concerns for future treatment and rehabilitation programmes. Significance: Those with longstanding CRPS may no longer meet diagnostic criteria but still be symptomatic. Defining recovery is therefore problematic in CRPS. Our study has identified patients’ definition of recovery from CRPS, in order of priority, as relief from: their CRPS-related pain, generalised pain, movement restriction, reliance on medication, and stiffness.

Citation

Harden, R. N., Llewellyn, A., McCabe, C., Hibberd, Y., White, P., Davies, L., …Moskovitz, P. (2018). Are you better? A multi-centre study of patient-defined recovery from Complex Regional Pain Syndrome. European Journal of Pain, 22(3), 551-564. https://doi.org/10.1002/ejp.1138

Journal Article Type Article
Acceptance Date Oct 5, 2017
Online Publication Date Dec 1, 2017
Publication Date Mar 1, 2018
Deposit Date Oct 31, 2017
Publicly Available Date Dec 1, 2018
Journal European Journal of Pain (United Kingdom)
Print ISSN 1090-3801
Electronic ISSN 1532-2149
Publisher Wiley
Peer Reviewed Peer Reviewed
Volume 22
Issue 3
Pages 551-564
DOI https://doi.org/10.1002/ejp.1138
Keywords multi-centre study, patient-defined recovery, Complex Regional Pain Syndrome
Public URL https://uwe-repository.worktribe.com/output/856286
Publisher URL http://dx.doi.org/10.1002/ejp.1138
Additional Information Additional Information : This is the peer reviewed version of the following article: [Llewellyn, A., McCabe, C., Hibberd, Y., White, P., Davies, L., Marinus, J., Perez, R., Thomassen, I., Brunner, F., Sontheim, C., Birklein, F., Schlereth, T., Goebel, A., Haigh, R., Connett, R., Maihofner, C., Knudsen, L., Norman, R. N., Zyluk, A., Shulman, D., Small, H., Gobeil, F. and Moskovitz, P. (2017) Are you better? A multi-centre study of patient-defined recovery from Complex Regional Pain Syndrome. European Journal of Pain. ISSN 1090-3801], which has been published in final form at http://dx.doi.org/10.1002/ejp.1138. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving.