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The challenges of managing Complex Regional Pain Syndrome throughout the care pathway - reporting therapists' perspectives

Coggins, Jessica; McCabe, Candy; Walsh, Nicola; Pearon, Jen; Rolls, Catherine; Collins, Catherine; Llewellyn, Alison

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Candy McCabe
Professor of Clinical Research and Practice

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Nicola Walsh
Professor in Knowledge Mobilisation & Muscul

Jen Pearson
Senior Lecturer in Physiotherapy (MSK and LTC)

Catherine Rolls

Catherine Collins

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Alison Llewellyn
Associate Professor in Clinical Research


Background and Aims
Complex Regional Pain Syndrome (CRPS) is a severe chronic pain condition which usually occurs following limb trauma[1] and causes significant burden to individuals and society. The UK has a small number of specialist CRPS centres, but access to these services can be limited and the majority of patients are referred to therapy services in local hospitals or the community. However, due to its rarity, therapists in local services may find it challenging to diagnose and manage the condition effectively. Nevertheless, patients report their need for timely access to therapies close to home.
The current study sought to better understand the nature of current therapy practices for CRPS in secondary care and in the community and of therapists' knowledge and confidence in managing CRPS. Perceived barriers and facilitators to CRPS care were also explored.
An e-survey was conducted between October and December 2021. Physiotherapists, Occupational Therapists and Hand Therapists who work with, or have worked with, people with CRPS were recruited via their professional bodies and social media. The survey consisted of multiple-choice questions and Likert scales, with additional free text options. In recognition of divergent policy approaches across nations and clinical specialities, for the purposes of the current study responses from those working outside England, or from other healthcare professions, were excluded from the analysis.
Of 77 responses, 62% were from Physiotherapists or Physiotherapists/Hand Therapists; 30% Occupational Therapists or Occupational/Hand Therapists, and the remainder were from those who reported their profession as solely hand therapy (8%). Specialist hand units were most commonly represented (34%), followed by specialist pain clinics (23%) and general outpatient departments of regional hospitals (14%); small units/private practice were least represented (5%).
Most respondents reprted knowing "a moderate amount" about CRPS (60%), with 26% reporting knowing "a lot", and 8% "a great deal". Furthermore, 77% felt confident in describing CRPS to patients. However, 14% of respondents stated they were "extremely unconfident" or "somewhat unconfident" at diagnosing CRPS. Only 32% of respondents reported having a defined CRPS patient management pathway in their service; however, 68% were aware of guidelines to support the management of CRPS.
The significant majority of respondents (92%) reported seeing a maximum of two CRPS cases per month. Management plans most commonly reported were: the provision of pain education (92%); sensory re-education (88%); pacing advice (85%); and active range of movement exercises (83%). 44% of respondents reported referring patients to pain clinics or pain management clinics via their family doctor (36%). Respondents also reported initiating onward referrals to the national CRPS specialist centre (17%) or regional specialist CRPS centres (15%).
Whilst 88% of respondents reported having received training in CRPS, over half (55%) stated that the training they had engaged with had been informal and from a variety of sources, including self-directed learning, in-service training or discussions with colleagues.
Free text responses described therapists' perceptions of challenges to CRPS management, in particular the difficulties of delayed diagnosis, lack of available appointments for regular follow-ups, and capacity issues relating to low staffing numbers. A percieved lack of experience, knowledge and understanding of CRPS, by therapists and by other healthcare professionals, was commonly cited. Suggested facilitators to good practice included: education provision and awareness of treatment options; good communication with patients and family doctors; early diagnosis and intervention; and the ability to refer to, or consult with, healthcare professionals with expertise in pain management.
This survey specifically targeted therapists working with, or who had worked with, people with CRPS, therefore a high level of knowledge was unsurprising, despite the low numbers of patients with CRPS beeing seen per month. However, few respondents reported having a defined care pathway for the management of CRPS, and the data indicated an unmet need in terms of formal education and training, alongside system-wide barriers that hinder CRPS referral and care.

1. Goebel A, Barker CH, Turner-Stokes L et al. Complex regional pain syndrome in adults: UK guidelines for diagnosis, referral and management in primary and secondary cre. London: RCP, 2018.


Coggins, J., McCabe, C., Walsh, N., Pearon, J., Rolls, C., Collins, C., & Llewellyn, A. (2022, September). The challenges of managing Complex Regional Pain Syndrome throughout the care pathway - reporting therapists' perspectives. Poster presented at International Association for the Study of Pain 2022 World Congress on Pain, Toronto, Canada

Presentation Conference Type Poster
Conference Name International Association for the Study of Pain 2022 World Congress on Pain
Conference Location Toronto, Canada
Start Date Sep 20, 2022
End Date Sep 23, 2022
Deposit Date Feb 27, 2023
Publicly Available Date Feb 27, 2023
Keywords Complex Regional Pain Syndrome; CRPS; Pain
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