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

Research output: Contribution to journalArticle

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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 languageEnglish
Pages (from-to)122-128
Number of pages7
JournalBritish Journal of Pain
Volume9
Issue number2
Early online date9 Jul 2014
DOIs
Publication statusPublished - May 2015

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Complex Regional Pain Syndromes
Registries
Validation Studies
Delayed Diagnosis
Age of Onset
Population
Chronic Disease
Extremities
Prospective Studies

Keywords

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

Cite this

Establishing the characteristics for patients with chronic Complex Regional Pain Syndrome : the value of the CRPS-UK Registry. / Shenker, Nicholas; Goebel, Andreas; Rockett, Mark; Batchelor, James; Jones, Gareth T; Parker, Richard; de C Williams, Amanda C; McCabe, Candida.

In: British Journal of Pain, Vol. 9, No. 2, 05.2015, p. 122-128.

Research output: Contribution to journalArticle

Shenker, Nicholas ; Goebel, Andreas ; Rockett, Mark ; Batchelor, James ; Jones, Gareth T ; Parker, Richard ; de C Williams, Amanda C ; McCabe, Candida. / Establishing the characteristics for patients with chronic Complex Regional Pain Syndrome : the value of the CRPS-UK Registry. In: British Journal of Pain. 2015 ; Vol. 9, No. 2. pp. 122-128.
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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.",
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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

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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.

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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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