title: Co-creation of information leaflets to meet the support needs of people living with complex regional pain syndrome (CRPS) through innovative use of wiki technology.
abstract: OBJECTIVE
  People living with complex regional pain syndrome (CRPS) experience frustration with the lack of knowledge and understanding of CRPS as a pain condition. We report on our attempt to address this issue.
  
  
  METHODS
  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.
  
  
  RESULTS
  Participants failed to engage with the wiki technology. We modified our procedure and completed an inductive analysis of a sister-forum which participants were using as part of the larger study. Six issues of importance were identified. We used the discussion forum threads to populate the themes. Due to a continued lack of engagement with the wiki technology, the team decided to create a suite of leaflets which were piloted with delegates at a CRPS patient conference.
  
  
  CONCLUSIONS
  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.
authors.affiliation: a School of Psychology, Sport and Exercise, Staffordshire University , Stoke-on-Trent , UK .
authors.forename: Karen
authors.initials: K
authors.lastname: Rodham
authors.affiliation: b Department of Psychology , University of Bath , Bath , UK .
authors.forename: Jeff
authors.initials: J
authors.lastname: Gavin
authors.affiliation: c Division of Rehabilitation and Ageing , University of Nottingham , Nottingham , UK .
authors.forename: Neil
authors.initials: N
authors.lastname: Coulson
authors.affiliation: d Department of Computer Science , University of Bath , Bath , UK.
authors.forename: Leon
authors.initials: L
authors.lastname: Watts
mesh_terms: D000328:Adult; D020918:Complex Regional Pain Syndromes / Q000523:psychology*; D005260:Female; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D010174:Pamphlets; D010353:Patient Education as Topic / Q000379:methods*; D061108:Social Media; D012944:Social Support
keywords: CRPS; information; support; wiki