Accessible Unlicensed Requires Authentication Published by De Gruyter August 25, 2020

Exploring the impact of pain management programme attendance on complex regional pain syndrome (CRPS) patients’ decision making regarding immunosuppressant treatment to manage their chronic pain condition

Calum Murray, Samantha Harrison, Andreas Goebel and Hannah Twiddy



Complex regional pain syndrome (CRPS) is a rare chronic pain condition for which no curative treatment exists. Patients in tertiary centres are often required to make decisions about treatment options. This study was conducted to explore how prior attendance of a pain management program might alter patients’ decision making processes.


This qualitative study uses focus groups to gather patient views on an immunosuppressant drug treatment (mycophenolate) for the management of CRPS. Participants were allocated to one of three focus groups based on their treatment journey; Group 1 (n=3) were involved in a recent mycophenolate drug trial; Group 2 (n=5) were neither involved in the trial nor attended a Pain Management Programme (PMP); Group 3 (n=6) were not involved in the trial but had attended a PMP. Outcomes were considered within the framework of Leventhal’s Common Sense Model (CSM) in relation to the decision making process.


Thematic analysis identified differing themes for each group. Group 1: (1) Medication as a positive form of treatment, (2) The trial/drug and (3) Pacing. Group 2: (1) Medication as form of treatment, (2) Other forms of support/treatment and (3) Side effects of mycophenolate. Group 3: (1) Varied view of medication, (2) Consideration of other forms of support and (3) Side effects.


Attendance on a PMP might provide patients with skills to better manage uncertainty when faced with various treatment options. Leventhal’s model goes some way to explaining this. The specific importance of, and benefit from understanding pacing when commencing an effective drug treatment for chronic pain became apparent.

Corresponding author: Hannah Twiddy, DClinPsy, Clinical Psychologist, Pain Management Programme, The Walton Centre NHS Foundation Trust, Liverpool, L9 7LJ, UK, E-mail:

Andreas Goebel and Hannah Twiddy: Shared authorship.

  1. Research funding: Authors state no funding involved.

  2. Author contributions: All authors have accepted responsibility for the entire content of this manuscript and approved its submission.

  3. Competing interests: Authors state no conflict of interest.

  4. Informed consent: Informed consent has been obtained from all individuals included in this study.

  5. Ethical approval: The research related to human use complies with all the relevant national regulations, institutional policies and was performed in accordance with the tenets of the Helsinki Declaration, and has been approved by the authors’ Institutional Review Board or equivalent committee.


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Supplementary Material

The online version of this article offers supplementary material (

Received: 2019-10-07
Accepted: 2020-04-13
Published Online: 2020-08-25
Published in Print: 2020-10-25

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