People living with complex regional pain syndrome (CRPS) experience frustration with the lack of knowledge and understanding of CRPS as a pain condition. This study attempted to address this issue.
People living with CRPS taking part in a larger study were invited to co-construct a CRPS wiki page that addressed the areas in which they had experienced the most difficulty. A blank wiki page was set up for participants to populate with issues they felt needed to be raised and addressed.
Participants failed to engage with the wiki technology. The study’s procedure was modified to include an inductive analysis of a sister-forum which participants were using as part of the larger study. Six issues of importance were identified. The study used the discussion forum threads to populate the themes. Due to a continued lack of engagement with the wiki technology, the study’s team decided to create a suite of leaflets which were piloted with delegates at a CRPS patient conference.
Future work should be mindful of the extent to which patients are able and willing to share their experiences through such technology. Striking the balance between patient-endorsed and researcher-driven co-creation of such material is imperative.