Establishing evidence –based management of Complex Regional Pain Syndrome to improve clinical outcomes throughout the care pathway (ENACT-CRPS).

Research question What are the key components of a specialist therapy-led in-patient rehabilitation intervention for people with Complex Regional Pain Syndrome (CRPS), and how might these be transformed to provide effective care delivered in other settings? Background CRPS is a severe chronic pain condition which usually occurs following limb trauma.

Associated with limb oedema, sensitivity to touch, colour and temperature changes, it causes significant burden to individuals and society. NHS UK guidelines recommend early referral for therapies that encourage limb movement and use.

However, due to its rarity, clinicians in non-specialist settings lack confidence and competence in diagnosing and treating CRPS.

NHS specialist centres in Bath and Liverpool provide evidence-based CRPS rehabilitation therapies but patients can only access these services when local services have “failed” to improve symptoms. Patients report how life-impacting CRPS is, and their need for timely access to therapies closer to home.

Aim: To develop a care package that will expedite patient access to evidence-based treatments across the CRPS care pathway.

This will provide a stratified approach to rehabilitation based on the level of severity/complexity of the presenting patient, and the skills and resources available to the treating therapist . Objectives: Assess the nature of the need, and resource capacity, for providing CRPS therapies across the care pathway.

Describe the therapy-led care within the Bath Programme, identify potential care package components for use across the care pathway, and consider fit against best-practice guidelines for non-specialist settings.

Agree the components of the therapy-led care package which are feasible for delivery in non-specialist clinical settings.

Deliver a draft therapy-led care package, and prepare a NIHR HS&DR funding application for its refinement, implementation and evaluation.

Methods: Applying Intervention Mapping methodology we will: Workpackage (WP)1, months 1-4 Disseminate an online survey to therapists working in non-specialist settings, to determine what they need to treat people with CRPS. Create a project website, including a forum for ongoing consultation/discussion.

WP2, months 4-12 Interview patients, specialist therapists, and therapists from non-specialist settings treating CRPS.

We want to learn what works well, and less well, what therapies are needed locally, and are practical to provide earlier in the care-pathway.

WP3, months 6-9 Observe therapies in situ on the Bath Programme, documenting how the programme operates, and the behaviours of patients and staff that are critical to therapy provision and receipt.

WP4, months 13-18 Informed by a prior evidence synthesis and utilising a stakeholder event with patients; non-specialist therapists; recognised CRPS specialists (including Liverpool colleagues); we will use the information from WPs 1-3 to create a stratified package of therapies that can be tailored to treat people with CRPS in non-specialist settings.

Prepare a NIHR HS&DR application for its future implementation and evaluation.

Anticipated impact and dissemination: We will tailor research findings to the specific requirements of relevant stakeholders and we will have actively engaged with them in preparation for the implementation of the care package.

Our primary output will be a first iteration of: “A Guide to Delivering Evidence-Based CRPS Therapy in Non-Specialist Settings”.