title: Patient experience in cystic fibrosis care: Development of a disease-specific questionnaire.
abstract: OBJECTIVE
  The aim of this study was to develop valid and reliable disease-specific questionnaires for adult patients with cystic fibrosis and for parents of minors with cystic fibrosis for assessing patient experience with cystic fibrosis care.
  
  
  METHODS
  The pilot versions of the questionnaires were developed based on a literature review, interviews with health professionals and focus groups. A postal survey with two reminders was conducted in 56 German cystic fibrosis centres recruiting 2874 participants. Psychometric evaluation was done via exploratory factor analysis and reliability and regression analysis. The questionnaires' ability to differentiate between subgroups and between cystic fibrosis centres was evaluated.
  
  
  RESULTS
  Response rates were 74% for both adult patients and parents. Ten factors were extracted for both the adult and the parents' models (Cronbach's alpha between 0.6 and 0.9), explaining 50% and 48% of the variance, respectively. The factors organisation & access and the doctor-patient/parent-interaction had the highest relevance for a good overall care experience. The questionnaires were able to distinguish between different cystic fibrosis centres.
  
  
  CONCLUSIONS
  The questionnaires are well suited for use in internal and external quality management of cystic fibrosis care due to their good psychometric properties, the ability to differentiate between centres and its practicability.
authors: Picker Institut Deutschland gGmbH, Hamburg, Germany CF Pilot Project Working Group stahl@pickerinstitut.de.
authors: Katja
authors: K
authors: Stahl
authors: CF Pilot Project Working Group Clinical Research, Schwerin, Germany.
authors: Gratiana
authors: G
authors: Steinkamp
authors: CF Pilot Project Working Group Private Practice, Schwerin, Germany.
authors: Gerald
authors: G
authors: Ullrich
authors: CF Pilot Project Working Group Instiute of Psychology, Technical University Braunschweig, Braunschweig, Germany.
authors: Wolfgang
authors: W
authors: Schulz
authors: CF Centre Cologne, Children's Hospital, University of Cologne, Cologne, Germany.
authors: Silke
authors: S
authors: van Koningsbruggen-Rietschel
authors: CF Centre Hamburg-Altona, Hamburg, Germany.
authors: Hans-Eberhard
authors: HE
authors: Heuer
authors: CF Centre, Medical University Innsbruck, Innsbruck, Austria.
authors: Helmut
authors: H
authors: Ellemunter
authors: Department for Pediatric and Pneumology/Immunology, CF Centre Berlin Charité-Universitätsmedizin Berlin, Berlin, Germany.
authors: Carsten
authors: C
authors: Schwarz
mesh_terms: D000293:Adolescent; D000328:Adult; D003550:Cystic Fibrosis / Q000523:psychology / Q000628:therapy*; D005260:Female; D006801:Humans; D008297:Male; D010290:Parents; D017060:Patient Satisfaction; D010817:Physician-Patient Relations; D010865:Pilot Projects; D011594:Psychometrics; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Cystic fibrosis; patient experience; reliability; survey; validity