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. Conclusion: Exploring the patients’ perspectives aids to identify strengths and weaknesses and helps to provide patient-centred care, which is important for persons with chronic illness.What is Known:• Patients’ views are important if health professionals aim at providing patient-centred care.• To evaluate the patients’ and parents’ perspective of care provided by specialized cystic fibrosis (CF) centres, a disease-specific questionnaire was developed and used for a nationwide survey in over 2000 parents and adult patients from 56 German CF centres.What is New:• In this single-centre experience, the questionnaire helped to identify and analyze strengths and weaknesses of our centre’s performance, enabled benchmarking and the introduction of specific quality improvement measures.• After we had redesigned policies and procedures, the results of the second survey 2 years later showed progress in several areas of care, indicating that the questionnaire can serve as a tool for providing patient-centred care as well as for quality improvement.