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

Get full access to this article

View all access options for this article.

References

Harden

Bruehl

Stanton-Hicks

. Proposed new diagnostic criteria for complex regional pain syndrome. Pain Med 2007; 8: 326–331.

De Mos

de Bruijn

Huygen

. The incidence of complex regional pain syndrome: a population-based study. Pain 2007; 129: 12–20.

Sandroni

Benrud-Larson

McClelland

. Complex regional pain syndrome type I: incidence and prevalence in Olmsted county, a population-based study. Pain 2003; 103: 199–207.

Vaneker

Wilder-Smith

OHG

Schrombges

. Impairments as measured by ISS do not greatly change between one and eight years after CRPS diagnosis. Eur J Pain 2006; 10: 639–644.

Kemler

de Vet

HCW

Barendse

GAM

. Effect of spinal cord stimulation for chronic complex regional pain syndrome type I: five-year final follow-up of patients in a randomized controlled trial. J Neurosurg 2008; 108: 292–298.

Zyluk

. The natural history of post-traumatic reflex sympathetic dystrophy. J Hand Surg Br 1998; 23: 20–23.

Geertzen

JHB

Dijkstra

van Sonderen

ELP

. Relationship between impairments, disability and handicap in reflex sympathetic dystrophy patients: a long-term follow-up study. Clin Rehabil 1998; 12: 402–412.

Galer

Henderson

Perander

. Course of symptoms and quality of life measurement in complex regional pain syndrome: a pilot survey. J Pain Symptom Manage 2000; 20(4): 286–292.

Field

Warwick

Bannister

. Long-term prognosis of displaced Colles’ fracture: a 10-year prospective review. Injury 1992; 23: 529–532.

10.

De Mos

Huygen

FJP

van der Hoeven-Borgman

. Outcome of the complex regional pain syndrome. Clin J Pain 2009; 25: 590–597.

11.

Turner-Stokes

Goebel

. UK Guidelines on CRPS. Clin Med 2011; 11: 596–600.

12.

Lamberg

Cronin-Fenton

Olesen

. Registration in the Danish Regional Nonmelanoma Skin Cancer Dermatology Database: completeness of registration and accuracy of key variables. Clin Epidemiol 2010; 2: 123–136.

13.

Harboe

Anthonsen

Bardram

. Validation of data and indicators in the Danish Cholecystectomy Database. Int J Qual Health Care 2009; 21: 160–168.

14.

Peters

Reimers

Manning

. Hand preference for writing and associations with selected demographic and behavioural variables in 255,100 subjects: the BBC internet study. Brain Cogn 2006; 62: 177–189.

15.

Wertli

Bachmann

Weiner

. Prognostic factors in Complex Regional Pain Syndrome 1: a systematic review. J Rehabil Med 2013; 45: 225–233.

16.

Veldman

Goris

. Multiple reflex sympathetic dystrophy. Pain 1996; 64: 463–466.

17.

Feldman

Downey

Schaffer-Neitz

. Pain, negative mood, and perceived social support in chronic pain patients: a daily diary study of people with reflex sympathetic dystrophy syndrome. J Consult Clin Psychol 1999; 67: 776–785.

18.

Bruehl

Chung

Burns

. Differential effects of expressive anger regulation on chronic pain in CRPS and non-CRPS limb pain patients. Pain 2003; 104: 647–654.

19.

Geertzen

JHB

de Bruijn

de Bruijn-Kofman

. Reflex sympathetic dystrophy: early treatment and psychological aspects. Arch Phys Med Rehabil 1994; 75: 442–446.

20.

De Rooij

Perez

RSGM

Huygen

. Spontaneous onset of complex regional pain syndrome. Eur J Pain 2010; 14: 510–513.

21.

Marinus

Moseley

Birklein

. Clinical features and pathophysiology of complex regional pain syndrome. Lancet Neurol 2011; 637–648.

22.

van Rijn

Marinus

Putter

. Spreading of complex regional pain syndrome: not a random process. J Neural Transm 2011; 118: 1301–1309.

23.

Brunner

Bachmann

Weber

. Complex Regional Pain Syndrome 1 − the Swiss cohort study. BMC Musculoskel Dis 2008; 9: 92.

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.05 MB