Establishing the Characteristics for Patients with Chronic Complex Regional Pain Syndrome: the Value of the CRPS-UK Registry

Overview

Journal Br J Pain

Date 2015 Oct 31

PMID 26516567

Citations 12

Authors

Nicholas Shenker

Andreas Goebel

Mark Rockett

James Batchelor

Gareth T Jones

Richard Parker

Amanda C de C Williams

Candida McCabe

Affiliations

Soon will be listed here.

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.

Citing Articles

How to establish and sustain a disease registry: insights from a qualitative study of six disease registries in the UK.

Stubbs E, Exley J, Wittenberg R, Mays N BMC Med Inform Decis Mak. 2024; 24(1):361.

PMID: 39604990 PMC: 11603652. DOI: 10.1186/s12911-024-02775-x.

Transient immune activation without loss of intraepidermal innervation and associated Schwann cells in patients with complex regional pain syndrome.

Hartmannsberger B, Scriba S, Guidolin C, Becker J, Mehling K, Doppler K J Neuroinflammation. 2024; 21(1):23.

PMID: 38233858 PMC: 10792943. DOI: 10.1186/s12974-023-02969-6.

An international study to explore the feasibility of collecting standardised outcome data for Complex Regional Pain Syndrome: recommendations for an international clinical research registry.

Grieve S, Brunner F, Cabral D, Connett R, Hirata H, Iwasaki N Br J Pain. 2023; 17(5):468-478.

PMID: 38107759 PMC: 10722111. DOI: 10.1177/20494637231188333.

Denying the Truth Does Not Change the Facts: A Systematic Analysis of Pseudoscientific Denial of Complex Regional Pain Syndrome.

Bharwani K, Kersten A, Stone A, Birklein F, Bruehl S, Dirckx M J Pain Res. 2021; 14:3359-3376.

PMID: 34737631 PMC: 8558034. DOI: 10.2147/JPR.S326638.

ICF-based multidisciplinary rehabilitation program for complex regional pain syndrome of the hand: efficacy, long-term outcomes, and impact of therapy duration.

Kotsougiani-Fischer D, Choi J, Oh-Fischer J, Diehm Y, Haug V, Harhaus L BMC Surg. 2020; 20(1):306.

PMID: 33256710 PMC: 7708143. DOI: 10.1186/s12893-020-00982-7.

References

Peters M, Reimers S, Manning J . Hand preference for writing and associations with selected demographic and behavioral variables in 255,100 subjects: the BBC internet study. Brain Cogn. 2006; 62(2):177-89. DOI: 10.1016/j.bandc.2006.04.005. View

Wertli M, Bachmann L, Weiner S, Brunner F . Prognostic factors in complex regional pain syndrome 1: a systematic review. J Rehabil Med. 2013; 45(3):225-31. DOI: 10.2340/16501977-1103. View

de Rooij A, Perez R, Huygen F, van Eijs F, van Kleef M, Bauer M . Spontaneous onset of complex regional pain syndrome. Eur J Pain. 2009; 14(5):510-3. DOI: 10.1016/j.ejpain.2009.08.007. View

Zyluk A . The natural history of post-traumatic reflex sympathetic dystrophy. J Hand Surg Br. 1998; 23(1):20-3. DOI: 10.1016/s0266-7681(98)80211-8. View

Galer B, Henderson J, Perander J, Jensen M . Course of symptoms and quality of life measurement in Complex Regional Pain Syndrome: a pilot survey. J Pain Symptom Manage. 2000; 20(4):286-92. DOI: 10.1016/s0885-3924(00)00183-4. View

Veldman P, Goris J . Multiple reflex sympathetic dystrophy. Which patients are at risk for developing a recurrence of reflex sympathetic dystrophy in the same or another limb. Pain. 1996; 64(3):463-466. DOI: 10.1016/0304-3959(95)00160-3. View

Lamberg A, Cronin-Fenton D, Olesen A . Registration in the Danish Regional Nonmelanoma Skin Cancer Dermatology Database: completeness of registration and accuracy of key variables. Clin Epidemiol. 2010; 2:123-36. PMC: 2943191. DOI: 10.2147/clep.s9959. View

van Rijn M, Marinus J, Putter H, Bosselaar S, Moseley G, van Hilten J . Spreading of complex regional pain syndrome: not a random process. J Neural Transm (Vienna). 2011; 118(9):1301-9. PMC: 3162139. DOI: 10.1007/s00702-011-0601-1. View

Field J, Warwick D, Bannister G, Gibson A . Long-term prognosis of displaced Colles' fracture: a 10-year prospective review. Injury. 1992; 23(8):529-32. DOI: 10.1016/0020-1383(92)90152-i. View

10.

de Mos M, de Bruijn A, Huygen F, Dieleman J, Stricker B, Sturkenboom M . The incidence of complex regional pain syndrome: a population-based study. Pain. 2006; 129(1-2):12-20. DOI: 10.1016/j.pain.2006.09.008. View

11.

Vaneker M, Wilder-Smith O, Schrombges P, Oerlemans H . Impairments as measured by ISS do not greatly change between one and eight years after CRPS 1 diagnosis. Eur J Pain. 2005; 10(7):639-44. DOI: 10.1016/j.ejpain.2005.10.003. View

12.

Feldman S, Downey G . Pain, negative mood, and perceived support in chronic pain patients: a daily diary study of people with reflex sympathetic dystrophy syndrome. J Consult Clin Psychol. 1999; 67(5):776-85. DOI: 10.1037//0022-006x.67.5.776. View

13.

Brunner F, Bachmann L, Weber U, Kessels A, Perez R, Marinus J . Complex regional pain syndrome 1--the Swiss cohort study. BMC Musculoskelet Disord. 2008; 9:92. PMC: 2443796. DOI: 10.1186/1471-2474-9-92. View

14.

Bruehl S, Chung O, Burns J . Differential effects of expressive anger regulation on chronic pain intensity in CRPS and non-CRPS limb pain patients. Pain. 2003; 104(3):647-654. DOI: 10.1016/S0304-3959(03)00135-0. View

15.

Harden R, Bruehl S, Stanton-Hicks M, Wilson P . Proposed new diagnostic criteria for complex regional pain syndrome. Pain Med. 2007; 8(4):326-31. DOI: 10.1111/j.1526-4637.2006.00169.x. View

16.

Turner-Stokes L, Goebel A . Complex regional pain syndrome in adults: concise guidance. Clin Med (Lond). 2012; 11(6):596-600. PMC: 4952345. DOI: 10.7861/clinmedicine.11-6-596. View

17.

de Mos M, Huygen F, van der Hoeven-Borgman M, Dieleman J, Stricker B, Sturkenboom M . Outcome of the complex regional pain syndrome. Clin J Pain. 2009; 25(7):590-7. DOI: 10.1097/AJP.0b013e3181a11623. View

18.

Geertzen J, Dijkstra P, van Sonderen E, Groothoff J, Ten Duis H, Eisma W . Relationship between impairments, disability and handicap in reflex sympathetic dystrophy patients: a long-term follow-up study. Clin Rehabil. 1998; 12(5):402-12. DOI: 10.1191/026921598676761735. View

19.

Marinus J, Moseley G, Birklein F, Baron R, Maihofner C, Kingery W . Clinical features and pathophysiology of complex regional pain syndrome. Lancet Neurol. 2011; 10(7):637-48. PMC: 5511749. DOI: 10.1016/S1474-4422(11)70106-5. View

20.

Harboe K, Anthonsen K, Bardram L . Validation of data and indicators in the Danish Cholecystectomy Database. Int J Qual Health Care. 2009; 21(3):160-8. DOI: 10.1093/intqhc/mzp009. View