Lived experience perspectives of persons with complex regional pain syndrome: a survey study of the history of their condition,treatments and functional outcomes

Abstract

Background

Complex Regional Pain Syndrome (CRPS) is a rare, chronic pain disorder that can have a devastating impact. Its cause remains unclear and debate over treatment strategies continues. The aim of the study was to utilise patient-reported outcomes to aid in the further evaluation of treatment options.

Method

An online survey was distributed with ethical approval to members of a CRPS charity. The Checklist for Reporting Results of Internet E-Surveys was implemented. Adults who met the patient-reported aspect of the Budapest Criteria were included (non-validated). Functional scores were reported using the shortened Disabilities of the Arm, Shoulder and Hand outcome measurement tool (QuickDASH) and Lower Extremity Functional Scale (LEFS). Participants completed a pre-injury score, a score related to injury and a score related specifically to CRPS symptoms. Respondents were also asked to rate a number of pharmacological and non-pharmacological treatments for CRPS.

Results

Respondents were mostly female (87%, 447/514) with a mean age of 49 years (SD 13). 69% (354/514) reported trauma as the inciting event. Anxiety (55%, 283/514) was the most commonly reported co-morbidity. Opioids (72%, 258/358) and Physical Therapy/Rehabilitation (63%, 281/444) were reported as the most beneficial (used by >10% of respondents) pharmacological and non-pharmacological therapies respectively. Median CRPS functional scores were significantly worse than scores relating to the injury alone, for both QuickDASH (56 (IQR 36–77) versus 77 (IQR 61–91), p < .001) and LEFS (20 (IQR 8–40) versus 7 (IQR 3–17), p < .001).

Conclusion

We present the first study using validated patient-reported outcome measures of limb-specific function in a solely CRPS population. These data quantify the devastating impact of CRPS and help make its prevention and treatment a priority amongst those who encounter it. The treatment data should inform future research, especially in successful therapies that were less commonly utilised.

Keywords

Complex regional pain syndromes Causalgia pain post-operative pain pain management reflex sympathetic dystrophy

Get full access to this article

View all access options for this article.

References

Bruehl

. Complex regional pain syndrome. Br Med J 2015; 351: h2730.

de Mos

Huygen

Dieleman

, et al. Medical history and the onset of complex regional pain syndrome (CRPS). Pain 2008; 139: 458–466.

Shim

Rose

Halle

, et al. Complex regional pain syndrome: a narrative review for the practising clinician. Br J Anaesth 2019; 123: e424–e433.

Harden

Bruehl

Perez

, et al. Validation of proposed diagnostic criteria (the “Budapest criteria”) for complex regional pain syndrome. Pain 2010; 150: 268–274.

Nights

. McGill pain index/pain scale for CRPS. 2023, 2024. https://www.burningnightscrps.org/crps/crps-information/what-is-crps/pain-scale/#:∼:text=CRPS%2C_is_classed_as_the,as_47_out_of_50

Kessler

Yoo

Calisoff

. Complex regional pain syndrome: an updated comprehensive review. NeuroRehabilitation 2020; 47: 253–264.

Marinus

Moseley

Birklein

, et al. Clinical features and pathophysiology of complex regional pain syndrome. Lancet Neurol 2011; 10: 637–648.

Goebel

Blaes

. Complex regional pain syndrome, prototype of a novel kind of autoimmune disease. Autoimmun Rev 2013; 12: 682–686.

Groeneweg

Antonissen

Huygen

, et al. Expression of endothelial nitric oxide synthase and endothelin-1 in skin tissue from amputated limbs of patients with complex regional pain syndrome. Mediat Inflamm 2008; 2008: 680981.

10.

Lenz

Üçeyler

Frettlöh

, et al. Local cytokine changes in complex regional pain syndrome type I (CRPS I) resolve after 6 months. Pain 2013; 154: 2142–2149.

11.

Binkley

Stratford

Lott

, et al. The Lower Extremity Functional Scale (LEFS): scale development, measurement properties, and clinical application. North American orthopaedic rehabilitation research network. Phys Ther 1999; 79: 371–383.

12.

Gummesson

Ward

Atroshi

. The shortened disabilities of the arm, shoulder and hand questionnaire (QuickDASH): validity and reliability based on responses within the full-length DASH. BMC Muscoskelet Disord 2006; 7: 44.

13.

Mintken

Glynn

Cleland

. Psychometric properties of the shortened disabilities of the arm, shoulder, and hand questionnaire (QuickDASH) and numeric pain rating scale in patients with shoulder pain. J Shoulder Elb Surg 2009; 18: 920–926.

14.

Microsoft Corporation. Microsoft Excel [computer program]. Version 16.38. Redmond, WA: Microsoft Corporation; 2019.

15.

Stangroom

. Social science statistics. https://www.socscistatistics.com/ (2023, accessed 26 02 2023).

16.

McManus

Bebbington

Jenkins

, et al. Mental health and wellbeing in England: adult psychiatric morbidity survey 2014. Leeds: NHS Digital, 2016.

17.

Fayaz

Croft

Langford

, et al. Prevalence of chronic pain in the UK: a systematic review and meta-analysis of population studies. BMJ Open 2016; 6: e010364.

18.

Natasha Allergy Research Foundation . Allergies - the facts. 2022. https://www.narf.org.uk/the-allergy-explosion

19.

National Institute of Clinical Excellence . What is the prevalence of Asthma? 2022. https://cks.nice.org.uk/topics/asthma/background-information/prevalence/

20.

National Institute of Clinical Excellence . Post-traumatic stress disorder: how common is it? 2022. https://cks.nice.org.uk/topics/post-traumatic-stress-disorder/background-information/prevalence/

21.

Cork

Danby

Ogg

. Atopic dermatitis epidemiology and unmet need in the United Kingdom. J Dermatol Treat 2020; 31: 801–809.

22.

Nacul

Lacerda

Pheby

, et al. Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care. BMC Med 2011; 9: 91.

23.

Maundrell

Proudman

. Epidemiology of Raynaud’s phenomenon. In: Wigley

Herrick

Flavahan

(eds). Raynaud’s Phenomenon: A Guide to Pathogenesis and Treatment. New York, NY: Springer New York, 2015, pp. 21–35.

24.

Diabetes UK . Diabetes prevalence. https://www.diabetes.org.uk/professionals/position-statements-reports/statistics/diabetes-prevalence-2019 (2019, 2022).

25.

Demmler

Atkinson

Reinhold

, et al. Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case-control comparison. BMJ Open 2019; 9: e031365.

26.

Pots

. What is POTS? 2022. https://www.potsuk.org/pots-for-medics/gp-guide/

27.

Lee

Lim

Hong

, et al. Multicenter survey of symptoms, work life, economic status, and quality of life of complex regional pain syndrome patients. Korean J Pain 2021; 34: 288–303.

28.

Grieve

Brunner

Cabral

, et al. An international study to explore the feasibility of collecting standardised outcome data for Complex Regional Pain Syndrome: recommendations for an international clinical research registry. Br J Pain 2023; 17: 468–478.

29.

Sharma

Agarwal

Broatch

, et al. A web-based cross-sectional epidemiological survey of complex regional pain syndrome. Reg Anesth Pain Med 2009; 34: 110–115.

30.

Monti

Herring

Schwartzman

, et al. Personality assessment of patients with complex regional pain syndrome type I. Clin J Pain 1998; 14: 295–302.

31.

Guo

Wei

, et al. Immobilization contributes to exaggerated neuropeptide signaling, inflammatory changes, and nociceptive sensitization after fracture in rats. J Pain 2014; 15: 1033–1045.

32.

Terkelsen

Bach

Jensen

. Experimental forearm immobilization in humans induces cold and mechanical hyperalgesia. Anesthesiology 2008; 109: 297–307.

33.

Goebel

Birklein

Brunner

, et al. The Valencia consensus-based adaptation of the IASP complex regional pain syndrome diagnostic criteria. Pain 2021; 162: 2346–2348.

34.

Sumitani

Yasunaga

Uchida

, et al. Perioperative factors affecting the occurrence of acute complex regional pain syndrome following limb bone fracture surgery: data from the Japanese Diagnosis Procedure Combination database. Rheumatology 2014; 53: 1186–1193.

35.

Sandroni

Benrud-Larson

McClelland

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

36.

de Mos

de Bruijn

Huygen

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

37.

Neumeister

Romanelli

. Complex regional pain syndrome. Clin Plast Surg 2020; 47: 305–310.

38.

GBD 2019 Fracture Collaborators . Global, regional, and national burden of bone fractures in 204 countries and territories, 1990-2019: a systematic analysis from the Global Burden of Disease Study 2019. Lancet Healthy Longev 2021; 2: e580–e592.

39.

Myles

Galagher

, et al. Measuring acute postoperative pain using the visual analog scale: the minimal clinically important difference and patient acceptable symptom state. Br J Anaesth 2017; 118: 424–429.

40.

Kehlet

Jensen

Woolf

. Persistent postsurgical pain: risk factors and prevention. Lancet 2006; 367: 1618–1625.

41.

Giusti

Bianchi

. Treatment of complex regional pain syndrome type I with bisphosphonates. RMD Open 2015; 1: e000056.

42.

Kwak

Choo

Chang

. Effectiveness of prednisolone in complex regional pain syndrome treatment: a systematic narrative review. Pain Pract 2022; 22: 381–390.

43.

Gutiérrez-Espinoza

Tabach-Apraiz

Oyanadel-Maldonado

. Physical therapy in patients with complex regional pain syndrome type I after distal radius fracture: a case series. J Phys Ther Sci 2019; 31: 403–407.

44.

Kemler

De Vet

Barendse

, et al. The effect of spinal cord stimulation in patients with chronic reflex sympathetic dystrophy: two years’ follow-up of the randomized controlled trial. Ann Neurol 2004; 55: 13–18.

45.

Sierakowski

Jing

Poel

, et al. Transcutaneous peripheral nerve stimulation for the treatment of neuropathic pain in the upper limb. J Hand Surg Asian Pac 2016; 21: 37–43.

46.

Grieve

Adams

McCabe

. ‘What I really needed was the truth’. Exploring the information needs of people with complex regional pain syndrome. Muscoskel Care 2016; 14: 15–25.

47.

Ingall

Bernstein

Shoji

, et al. Using the QuickDASH to model clinical recovery trajectory after operative management of distal radius fracture. J Hand Surg Glob Online 2021; 3: 1–6.

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

0.41 MB