Background & Aims
Complex Regional Pain Syndrome (CRPS) is a severely disabling and distressing chronic pain condition that usually occurs following trauma to a limb [1] and can lead to significant burden for individuals and society.
A small number of centres of specialist CRPS practice exist in England, but access to these is limited and most patients are managed in local hospitals or community settings. However, the majority of English NHS Trusts have no specified care pathway for CRPS [2] and anecdotal evidence suggests therapists working outside of specialist centres can lack confidence and competence in diagnosing and treating CRPS, due to the rarity of the condition.
This programme of work used multiple approaches to engage with therapists and patients to better understand the therapy approaches for CRPS delivered within, and outside, of centres of specialist practice. The overarching aim was to identify recommendations for the improvement of the management of CRPS throughout the care pathway.
Methods
Initial work comprised a literature review of therapeutic interventions for CRPS and a scoping exercise to identify centres of specialist CRPS practice in England. A subsequent e-survey was disseminated via physiotherapy, occupational therapy and hand therapy professional bodies, and via social media. Questions sought to understand the nature of therapy practices for CRPS in England and perceived barriers and facilitators to care. Survey respondents, therapists working in the centres of specialist CRPS practice, and patients identified via the UK CRPS Registry, were then invited to participate in individual semi-structured qualitative interviews. Interview data were thematically analysed and integrated with the prior survey results. Finally, two online stakeholder events were convened with heterogeneous cohorts of therapists and patients, and an adapted nominal group technique used to review findings and prioritise recommendations to enhance CRPS care.
Results
Twelve centres of specialist CRPS practice in England were identified. N=77 e-survey respondents described the therapies they deliver, perceived barriers to CRPS management, and systemic challenges within current care pathways.
Findings from N=31 interviews (n=10 patients, n=9 therapists from centres of specialist CRPS practice, and n=12 therapists from other settings) indicated broadly similar therapy approaches across care settings, however specialist centres have greater focus on function than pain reduction, and are more likely to offer multidisciplinary care in longer, more frequent, appointments. Patients reported feeling reassured by the knowledge and confidence of therapists in specialist centres.
Stakeholder groups’ recommendations to improve care included: providing additional education and support to therapists; facilitating access to CRPS “experts” and psychology advice; providing CRPS education for other clinicians; and improving the provision of patient information.
Conclusions
For the first time, this work documents the challenges faced by therapists when providing care for people with CRPS in England. Furthermore, it outlines therapists’ and patients’ perspectives on opportunities to improve care. Findings indicated the needs of therapists working outside of centres of specialist CRPS practice, including the resources, education and advice required to best support the care being delivered. Whilst the data collected evidenced systemic challenges within NHS services, a range of avenues by which to directly inform and influence healthcare practice were identified.
Whilst recognising that further work will be needed to maximise the impact of this research, a number of opportunities to address therapists’ needs in the short term were identified. These included providing input to inform future updates of the clinical guidelines, and exploring mechanisms to extend and enhance sources of specialist support to therapists.
References
1. Harden, R. N., Bruehl, S., Perez, R. S., Birklein, F., Marinus, J., Maihofner, C., Lubenow, T., Buvanendran, A., Mackey, S., Graciosa, J., & Mogilevski, M. (2010). Validation of proposed diagnostic criteria (the “Budapest Criteria”) for complex regional pain syndrome. Pain, 150, 268–274.
2. Gillespie, S., Cowell, F., McCabe, C., & Goebel, A. (2018). Complex regional pain syndrome acute care pathways in England: Do they exist and what do they look like? Hand Therapy, 23, 95–99
Presenting Author
Alison Llewellyn
Poster Authors
Alison Llewellyn
PhD
University of the West of England
Lead Author
Jessica Coggins
BSc
University of the West of England
Lead Author
Candida McCabe
PhD
University of the West of England
Lead Author
Nicola Walsh
PhD
University of the West of England
Lead Author
Jennifer Pearson
PhD
University of the West of England
Lead Author
Catherine Collins
University of the West of England
Lead Author
Topics
- Specific Pain Conditions/Pain in Specific Populations: Complex Regional Pain Syndrome (CRPS)