Background: Twenty-one to 63% of patients with cystic fibrosis (CF) accepted for lung and heart-lung transplantation die on the waiting list. A significant delay between referral and assessment may present an unrecognized hazard toward mortality.
Methods: All parents of children with CF aged 3 to 15 years enrolled in the Vienna CF center were sent questionnaires to investigate their attitudes toward provision of information on lung transplantation (LT).
Results: Complete questionnaires were obtained from 59 mothers and 47 fathers of 60 children. Thinking of LT evoked anxiety among 88% of parents, yet 54% wanted to get information at the present time. Parents younger than 30 years and older than 40 years were most interested in obtaining information. Recommendations for the clinicians showed preference for early over health deterioration-induced information (58% vs. 42%). The predominant fears associated with LT were the risk of dying (91%), physical pain (90%), and graft rejection (80%). First information on LT should be presented by the usual CF physician (96%) in the form of a face-to-face conversation (97%) and in the absence of the child (77%). Among the desired content areas, information about the chances LT offers had highest priority (86%). Thorough explanation of the rationale behind the transplant proposal (81%) and details of the whole procedure were requested. If their child were to actually need a transplant, many parents would rely on the doctor's assistance in jointly talking to the child (64%). The most helpful interventions for decision-making included meetings with successfully transplanted individuals (84%) and repeated discussions with experts.
Conclusions: Information may be implemented in medical care as a preventive strategy to avoid dangerous delays in case of unexpected turns toward the need for LT. A policy of recognition and acceptance of parental reluctance is mandatory.