Patient experience in cystic fibrosis care: Development of a disease-specific questionnaire

Katja Stahl*, Gratiana Steinkamp, Gerald Ullrich, Wolfgang Schulz, Silke Van Koningsbruggen-Rietschel, Hans Eberhard Heuer, Helmut Ellemunter, Carsten Schwarz

*Corresponding author for this work
5 Citations (Scopus)


Objectives: 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 (Cronbachs alpha between 0.6 and 0.9), explaining 50% and 48% of the variance, respectively. The factors organisation & access and the doctorpatient/parent-interaction had the highest relevance for a good overall care experience. The questionnaires were able to distinguish between different cystic fibrosis centres.

Original languageEnglish
JournalChronic Illness
Issue number2
Pages (from-to)108-125
Number of pages18
Publication statusPublished - 06.06.2015

Research Areas and Centers

  • Health Sciences

DFG Research Classification Scheme

  • 205-02 Public Health, Health Services Research and Social Medicine
  • 205-13 Pneumology, Thoracal Surgery
  • 205-20 Pediatric and Adolescent Medicine
  • 205-01 Epidemiology, Medical Biometrics/Statistics

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