WS6.5 Experience and satisfaction of patients and parents with CF services – A nationwide survey in Germany

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Objectives: To assess the patients’ experiences with care provided by staff in CF centres, we developed a CF-specific questionnaire in 2009 [1]. After a pilot study [2], the revised form was used for a nationwide survey. Methods: 90 CF centres in Germany were invited to participate. Centre staff collected patient consent forms and sent the patients’ addresses to the Picker Institute Germany. The 110 items had 3 to 6 response categories, which were dichotomised to “problem scores” (PS). The ideal score is 0%, indicating no problem. Results: 56 CF centres took part in the survey and recruited 1642 adults with CF and 1205 parents. The response rates were 74% in each group. Factor analysis revealed 10 different factors covering 70 of the 110 items. Participants reported the best results for the factors “physiotherapists” (PS 6%) and “physician-patient relationship” (PS 9%). Factors with the highest problem scores were inpatient and outpatient “facilities and services”. Items with high PS were “not enough information on possible side effects of drugs” (PS 49%) and “inadequate support to meet other patients/families” (PS 46%). For each item and factor, the institutions received reports of their own results and the mean PS of all participating centres. The problem scores differed considerably between CF centres. Conclusion: The CF-specific patient experience survey identified areas with higher and lower patient satisfaction. Centre staff can use the results to augment the quality of care. Supported by an educational grant from Mukoviszidose e.V., the German CF Association.