REFERRAL FOR LUNG TRANSPLANTATION - EXPERIENCE OF A BIRMINGHAM ADULT CYSTIC-FIBROSIS CENTER BETWEEN 1987 AND 1994

Background - Whilst much is known of the outcome of lung transplantati on for patients with cystic fibrosis, less is known about those patien ts who are either not referred for transplantation or who die before a donor is available. The referral practice and outcome of all the cyst ic fibrosis patients in one clinic was documented, whether or not they were assessed for lung transplantation. The results give a perspectiv e on the impact of the current transplantation programmes on the adult cystic fibrosis population as a whole. Methods - A retrospective stud y was made of patient deaths and referrals for lung transplantation be tween 1987 and 1994 from the Adult Cystic Fibrosis Clinic at Birmingha m Heartlands Hospital. Results - The Birmingham Heartlands Adult Cysti c Fibrosis Clinic has managed 192 patients since its beginning and cur rently cares for 141 patients. Since 1987 there have been 16 deaths in patients with cystic fibrosis who were considered unsuitable for lung transplantation. Of 49 patients referred for lung transplantation, 47 were accepted on to a provisional or active waiting List. The mean (S E) age at referral was 23.9 (0.7) years and mean (SE) forced expirator y volume in one second (FEV(1)) was 0.87 (0.04) 1. Fourteen patients d ied whilst awaiting transplantation and 19 received donor lungs. There have been 10 deaths in the transplanted group. Survival following tra nsplantation was 58% at one year and 52% at two years. Conclusion - Mo st of the deaths that occurred in the Cystic Fibrosis Clinic were in p atients who either were not considered suitable for transplantation or were still awaiting transplantation. Whilst lung transplantation is t he focus for many adults with cystic fibrosis, lack of donor organs ha s limited the impact of transplant programmes on the clinic.