Identifying specific needs in adult cystic fibrosis patients: a pilot study using a custom questionnaire

Abstract Background Adult patients with cystic fibrosis (CF) experience daily physical symptoms and disabilities that can be challenging to address for health care teams. Methods We sought to identify the most frequent topics that CF adults need to discuss with health care teams using a custom questionnaire including 62 items. Results Fifty patients were included, 70% men, mean age 27.6 years, with a mean body mass index of 21.8 kg/m2. Mean FEV1% was 64% of predicted value. Forty-two percent of patients selected at least one topic. The most frequently selected topics were fatigue (20%), professional or scholar worries (18%), procreation (16%), physical activities (16%) and evolution of CF disease (16%). Women were more frequently concerned about fatigue, procreation and profession/school. Conclusions Using a custom questionnaire, we identified that CF adults express various unmet needs that extend beyond usual respiratory and nutritional concerns or treatment adherence. The interest of this questionnaire by health care team for improving therapeutic management of CF patients remains to be validated. Trial registration: The study was registered on ClinicalTrials.gov (NCT02924818) on 5th October 2016