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 journalArticlepeer-review

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
DOIs
Publication statusPublished - 9 Jul 2014

Keywords

  • Causalgia
  • Chronic pain
  • Complex regional pain syndromes
  • Intractable
  • Pain
  • Reflex sympathetic dystrophy

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