title: The contribution of online peer-to-peer communication among patients with adrenal disease to patient-centered care.
abstract: BACKGROUND
  Addison's disease and Cushing's syndrome are rare. The Dutch Adrenal Society offers an online forum for Dutch adrenal patients to meet and communicate. However, little is known about the added value such a forum has for the delivery of patient-centered care.
  
  
  OBJECTIVE
  Our aim was to analyze the purposes of online patient-to-patient forum conversations, within the context of patient-centered care.
  
  
  METHODS
  For this study a consecutive sample of 300 questions ("threads") from the past 3.5 years was selected from the forum. The content of these patient-driven questions was analyzed based on the dimensions of patient-centeredness of the Picker Institute. This analysis was performed using ATLAS.ti.
  
  
  RESULTS
  From the 390 questions analyzed, 80.8% (N=315) were intended to gain more information about the disease, the treatment, and to verify if other patients had similar complaints. To a much lesser extent (38/390, 9.7%), questions expressed a call for emotional support. Patients answered primarily by giving practical tips to fellow patients and to share their own experiences.
  
  
  CONCLUSIONS
  On an online patient forum for Cushing's syndrome and Addison's disease, patients appear to primarily gain knowledge and, to a lesser extent, emotional support from their peers. This experience-based knowledge has become a very important information source. As such, patients can make a substantial contribution to the creation of patient-centered care if this knowledge is integrated into the care provided by health care professionals.
authors.affiliation: Radboud University Medical Center, Department of Internal Medicine, Division Endocrinology, Nijmegen, Netherlands.
authors.forename: Dirkjan
authors.identifier: http://orcid.org/0000-0003-1430-3830
authors.initials: D
authors.lastname: Kauw
authors.forename: Han
authors.identifier: http://orcid.org/0000-0002-1294-0521
authors.initials: H
authors.lastname: Repping-Wuts
authors.forename: Alida
authors.identifier: http://orcid.org/0000-0003-3890-5019
authors.initials: A
authors.lastname: Noordzij
authors.forename: Nike
authors.identifier: http://orcid.org/0000-0001-5268-9370
authors.initials: N
authors.lastname: Stikkelbroeck
authors.forename: Ad
authors.identifier: http://orcid.org/0000-0003-1075-2655
authors.initials: A
authors.lastname: Hermus
authors.forename: Marjan
authors.identifier: http://orcid.org/0000-0001-6491-7035
authors.initials: M
authors.lastname: Faber
mesh_terms: D000047:Academies and Institutes; D000224:Addison Disease / Q000628:therapy; D003142:Communication; D003480:Cushing Syndrome / Q000628:therapy; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D020407:Internet / Q000706:statistics & numerical data*; D009426:Netherlands; D010353:Patient Education as Topic / Q000379:methods*; D018802:Patient-Centered Care / Q000379:methods*; D010379:Peer Group; D012944:Social Support; D012955:Societies, Medical
keywords: Addison’s disease; Cushing’s syndrome; online forum; self care