title: Lost in translation? How adults living with Cystic Fibrosis understand treatment recommendations from their healthcare providers, and the impact on adherence to therapy.
abstract: This study builds on the limited research documenting Cystic Fibrosis (CF) patients' understanding of treatment recommendations and how this may impact adherence to therapy.
  
  
  
  We surveyed adults with CF and their healthcare professional (HCP) to capture treatment recommendations provided by the HCP, and patients' knowledge, and frequency of performance, of these recommendations. We classified CF participants' understanding of treatment recommendations (correct/incorrect) as compared to the actual recommendations made by the HCP. We computed CF participants' adherence in relation to HCP treatment recommendations and to their own understanding of treatment recommendations (adherent/non-adherent).
  
  
  
  Complete HCP and patient data were available for 42 participants. The recommended treatment frequency was correctly understood by 0%-87.8% of CF participants. Adherence to HCP treatment recommendations ranged from 0 to 68.3% (mean 45.4%±21.5), and rates were low (<33%) for acapella, percussion/postural drainage, tobramycin nebulization and insulin. Participants' adherence was greater when calculated in relation to participants' understanding of treatment recommendations (62.4%±25.1) than when calculated in relation to actual HCP treatment recommendations (45.4%±21.5%) (p=0.009).
  
  
  
  Adults with CF misunderstand treatment recommendations; this likely affects treatment adherence. Interventions to ensure HCPs use effective communication strategies are needed.
authors.affiliation: Ottawa Hospital Research Institute, Ottawa, Canada; The Ottawa Hospital, Ottawa, Canada; The University of Ottawa, Ottawa, Canada; Division of Respiratory Medicine, The Ottawa Hospital, Ottawa, Canada. Electronic address: spakhale@ohri.ca.
authors.forename: S
authors.initials: S
authors.lastname: Pakhale
authors.affiliation: Ottawa Hospital Research Institute, Ottawa, Canada; The University of Ottawa, Ottawa, Canada.
authors.forename: J
authors.initials: J
authors.lastname: Baron
authors.affiliation: Ottawa Hospital Research Institute, Ottawa, Canada.
authors.forename: M
authors.initials: M
authors.lastname: Armstrong
authors.affiliation: Ottawa Hospital Research Institute, Ottawa, Canada; The Ottawa Hospital, Ottawa, Canada; The University of Ottawa, Ottawa, Canada.
authors.forename: G
authors.initials: G
authors.lastname: Tasca
authors.affiliation: The Ottawa Hospital, Ottawa, Canada.
authors.forename: E
authors.initials: E
authors.lastname: Gaudet
authors.affiliation: Ottawa Hospital Research Institute, Ottawa, Canada; The Ottawa Hospital, Ottawa, Canada; The University of Ottawa, Ottawa, Canada; Division of Respiratory Medicine, The Ottawa Hospital, Ottawa, Canada.
authors.forename: S D
authors.initials: SD
authors.lastname: Aaron
authors.affiliation: Ottawa Hospital Research Institute, Ottawa, Canada; The Ottawa Hospital, Ottawa, Canada; The University of Ottawa, Ottawa, Canada.
authors.forename: W
authors.initials: W
authors.lastname: Cameron
authors.affiliation: Ottawa Hospital Research Institute, Ottawa, Canada; The Ottawa Hospital, Ottawa, Canada; The University of Ottawa, Ottawa, Canada.
authors.forename: L
authors.initials: L
authors.lastname: Balfour
mesh_terms: D000328:Adult; D003142:Communication; D003550:Cystic Fibrosis / Q000628:therapy*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006282:Health Personnel; D006801:Humans; D008297:Male; D010349:Patient Compliance; D010353:Patient Education as Topic; D011369:Professional-Patient Relations; D011795:Surveys and Questionnaires; D014177:Translations
keywords: Adherence; Communication; Health literacy; Patient education; Patient understanding; Patient-oriented research