Establishing the characteristics for patients with chronic Complex Regional Pain Syndrome: the value of the CRPS-UK Registry

Nicholas Shenker; Andreas Goebel; Mark Rockett; James Batchelor; Gareth T Jones; Richard Parker; Amanda C de C Williams; Candida McCabe

doi:10.1177/2049463714541423

Establishing the characteristics for patients with chronic Complex Regional Pain Syndrome: the value of the CRPS-UK Registry

Nicholas Shenker, Andreas Goebel, Mark Rockett, James Batchelor, Gareth T Jones, Richard Parker, Amanda C de C Williams, Candida McCabe

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Abstract

OBJECTIVE: The long-term prognosis of patients with Complex Regional Pain Syndrome (CRPS) is unknown with no reported prospective studies from the United Kingdom longer than 18 months. The CRPS-UK Network aims to study this by use of a Registry. The aims of this article are, to outline the CRPS-UK Registry, assess the validity of the data and to describe the characteristics of a sample of the UK CRPS population.

METHODS: A web-based CRPS-UK Registry was developed and made accessible to centres experienced in diagnosing and managing patients with CRPS. Pragmatic annual follow-up questions were agreed.

RESULTS: Up until July 2013, the Registry has recruited 240 patients. A blinded, validation study of 20 consecutive patients from two centres (10 each) demonstrated 95.6% completion and 99.4% accuracy of a random sample of the recorded data. These patients had chronic disease (median duration: 29 months); 72.5% were female (2.6:1), with a mean age at symptoms onset of 43 years, and were left-handed more than expected (21.8% versus 10% in the general population). Patients reported a delayed diagnosis, with the median time between symptom onset and diagnosis of 6 months. In all, 30 patients (12.5%) had multiple limb involvement and (83.3%) had a contiguous spread of CRPS.

CONCLUSION: CRPS-UK Registry is a validated method for actively recruiting well-characterised patients with CRPS to provide further information on the long-term outcome.

Original language	English
Pages (from-to)	122-128
Number of pages	7
Journal	British Journal of Pain
Volume	9
Issue number	2
Early online date	9 Jul 2014
DOIs	https://doi.org/10.1177/2049463714541423
Publication status	Published - May 2015

Bibliographical note

Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Prof. McCabe is funded by a National Institute for Health Research Career Development Fellowship (CDF-2009-02-38).
Yvette Hibberd and Lindsay Davies contributed to data collection, both of whom have received funds from the Bath Institute for Rheumatic Diseases.

Keywords

complex regional pain syndromes
chronic pain
causalgia
pain
intractable
reflex sympathetic dystrophy

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Accepted Manuscript
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title = "Establishing the characteristics for patients with chronic Complex Regional Pain Syndrome: the value of the CRPS-UK Registry",

abstract = "OBJECTIVE: The long-term prognosis of patients with Complex Regional Pain Syndrome (CRPS) is unknown with no reported prospective studies from the United Kingdom longer than 18 months. The CRPS-UK Network aims to study this by use of a Registry. The aims of this article are, to outline the CRPS-UK Registry, assess the validity of the data and to describe the characteristics of a sample of the UK CRPS population.METHODS: A web-based CRPS-UK Registry was developed and made accessible to centres experienced in diagnosing and managing patients with CRPS. Pragmatic annual follow-up questions were agreed.RESULTS: Up until July 2013, the Registry has recruited 240 patients. A blinded, validation study of 20 consecutive patients from two centres (10 each) demonstrated 95.6% completion and 99.4% accuracy of a random sample of the recorded data. These patients had chronic disease (median duration: 29 months); 72.5% were female (2.6:1), with a mean age at symptoms onset of 43 years, and were left-handed more than expected (21.8% versus 10% in the general population). Patients reported a delayed diagnosis, with the median time between symptom onset and diagnosis of 6 months. In all, 30 patients (12.5%) had multiple limb involvement and (83.3%) had a contiguous spread of CRPS.CONCLUSION: CRPS-UK Registry is a validated method for actively recruiting well-characterised patients with CRPS to provide further information on the long-term outcome.",

keywords = "complex regional pain syndromes, chronic pain, causalgia, pain, intractable , reflex sympathetic dystrophy",

author = "Nicholas Shenker and Andreas Goebel and Mark Rockett and James Batchelor and Jones, {Gareth T} and Richard Parker and {de C Williams}, {Amanda C} and Candida McCabe",

note = "Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Prof. McCabe is funded by a National Institute for Health Research Career Development Fellowship (CDF-2009-02-38). Yvette Hibberd and Lindsay Davies contributed to data collection, both of whom have received funds from the Bath Institute for Rheumatic Diseases.",

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AU - Shenker, Nicholas

AU - Goebel, Andreas

AU - Rockett, Mark

AU - Batchelor, James

AU - Jones, Gareth T

AU - Parker, Richard

AU - de C Williams, Amanda C

AU - McCabe, Candida

N1 - Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Prof. McCabe is funded by a National Institute for Health Research Career Development Fellowship (CDF-2009-02-38). Yvette Hibberd and Lindsay Davies contributed to data collection, both of whom have received funds from the Bath Institute for Rheumatic Diseases.

PY - 2015/5

Y1 - 2015/5

N2 - OBJECTIVE: The long-term prognosis of patients with Complex Regional Pain Syndrome (CRPS) is unknown with no reported prospective studies from the United Kingdom longer than 18 months. The CRPS-UK Network aims to study this by use of a Registry. The aims of this article are, to outline the CRPS-UK Registry, assess the validity of the data and to describe the characteristics of a sample of the UK CRPS population.METHODS: A web-based CRPS-UK Registry was developed and made accessible to centres experienced in diagnosing and managing patients with CRPS. Pragmatic annual follow-up questions were agreed.RESULTS: Up until July 2013, the Registry has recruited 240 patients. A blinded, validation study of 20 consecutive patients from two centres (10 each) demonstrated 95.6% completion and 99.4% accuracy of a random sample of the recorded data. These patients had chronic disease (median duration: 29 months); 72.5% were female (2.6:1), with a mean age at symptoms onset of 43 years, and were left-handed more than expected (21.8% versus 10% in the general population). Patients reported a delayed diagnosis, with the median time between symptom onset and diagnosis of 6 months. In all, 30 patients (12.5%) had multiple limb involvement and (83.3%) had a contiguous spread of CRPS.CONCLUSION: CRPS-UK Registry is a validated method for actively recruiting well-characterised patients with CRPS to provide further information on the long-term outcome.

AB - OBJECTIVE: The long-term prognosis of patients with Complex Regional Pain Syndrome (CRPS) is unknown with no reported prospective studies from the United Kingdom longer than 18 months. The CRPS-UK Network aims to study this by use of a Registry. The aims of this article are, to outline the CRPS-UK Registry, assess the validity of the data and to describe the characteristics of a sample of the UK CRPS population.METHODS: A web-based CRPS-UK Registry was developed and made accessible to centres experienced in diagnosing and managing patients with CRPS. Pragmatic annual follow-up questions were agreed.RESULTS: Up until July 2013, the Registry has recruited 240 patients. A blinded, validation study of 20 consecutive patients from two centres (10 each) demonstrated 95.6% completion and 99.4% accuracy of a random sample of the recorded data. These patients had chronic disease (median duration: 29 months); 72.5% were female (2.6:1), with a mean age at symptoms onset of 43 years, and were left-handed more than expected (21.8% versus 10% in the general population). Patients reported a delayed diagnosis, with the median time between symptom onset and diagnosis of 6 months. In all, 30 patients (12.5%) had multiple limb involvement and (83.3%) had a contiguous spread of CRPS.CONCLUSION: CRPS-UK Registry is a validated method for actively recruiting well-characterised patients with CRPS to provide further information on the long-term outcome.

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DO - 10.1177/2049463714541423

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SN - 2049-4637

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JO - British Journal of Pain

JF - British Journal of Pain

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ER -

Establishing the characteristics for patients with chronic Complex Regional Pain Syndrome: the value of the CRPS-UK Registry

Abstract

Bibliographical note

Keywords

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