HEALTH-INDEPENDENT LUNG TRANSPLANTATION INFORMATION OF PARENTS OF CHILDREN WITH CYSTIC-FIBROSIS

Background. Twenty-one to 63% of patients with cystic fibrosis (CF) ac cepted for lung and heart-lung transplantation die on the waiting list . A significant delay between referral and assessment may present an u nrecognized 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 info rmation 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 info rmation at the present time. Parents younger than 30 years and older t han 40 years were most interested in obtaining information. Recommenda tions for the clinicians showed preference for early over health deter ioration-induced information (58% vs. 42%). The predominant fears asso ciated 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 conversatio n (97%) and in the absence of the child (77%). Among the desired conte nt areas, information about the chances LT offers had highest priority (86%). Thorough explanation of the rationale behind the transplant pr oposal (81%) and details of the whole procedure were requested. If the ir child were to actually need a transplant, many parents would rely o n the doctor's assistance in jointly talking to the child (64%). The m ost helpful interventions for decision-making included meetings with s uccessfully transplanted individuals (84%) and repeated discussions wi th experts. Conclusions. Information may be implemented in medical car e as a preventive strategy to avoid dangerous delays in case of unexpe cted turns toward the need for LT. A policy of recognition and accepta nce of parental reluctance is mandatory.