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

Scand J Pain. 2020 Oct 25;20(4):707-716. doi: 10.1515/sjpain-2019-0142.


Objectives 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. Methods 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. Results 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. Conclusions 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.

Keywords: CRPS; chronic pain; focus groups; mycophenolate; pain management; treatment decision making.

MeSH terms

  • Complex Regional Pain Syndromes / drug therapy*
  • Complex Regional Pain Syndromes / psychology
  • Decision Making
  • Focus Groups
  • Humans
  • Immunosuppressive Agents / administration & dosage*
  • Immunosuppressive Agents / adverse effects
  • Mycophenolic Acid / administration & dosage*
  • Mycophenolic Acid / adverse effects
  • Pain Management / methods*
  • Patient Acceptance of Health Care / psychology
  • Qualitative Research


  • Immunosuppressive Agents
  • Mycophenolic Acid