Evaluating patient experience in a cystic fibrosis centre using a disease-specific patient satisfaction questionnaire

Medical care for persons with chronic diseases like cystic fibrosis (CF) is provided by multi-professional teams. We assessed the patients’ perspective of care by reporting the results of two consecutive patient satisfaction surveys performed within a 2-year interval at our CF centre. The newly developed, disease-specific questionnaire for parents and adults had 104 items with up to 6 response categories each. For data analysis, responses were dichotomized into a problem score with 0 % as the ideal result. Adolescents were surveyed using a different questionnaire. Seventy-six and 89 respondents, respectively, took part in the 2009 and 2011 surveys (response rates: 72 to 84 %). In 2009, the ideal problem score of 0 % was reported for 18 and 20 % of all items in adults and parents, respectively. Thirteen items had a problem score >30 %. After the whole team had implemented quality improvement measures, the 2011 survey showed a >10 % decrease in problem scores for 11 and 21 % of items in the adults and parents groups, respectively. Adolescents also reported better experiences in 2011 than in 2009.