THE PATIENTS VIEW OF NOCTURNAL GASTROSTOMY FEEDING IN CYSTIC-FIBROSIS

Background: Chronic malnutrition in cystic fibrosis (CF) patients has been treated successfully with supplemental nocturnal feeding by percutaneous endoscopic gastrostomy tubes. So far, few data are available about the psychosocial aspects of this tube feeding. Methods: By means of structured interviews, on average taken 4 months after the beginning of tube feeding, we investigated 18 CF patients, aged 7 to 26 years, and with a lung function indicating severe lung disease (mean FEV, 35% of predicted), concerning their views on the tube feeding. Results: Prior to the tube feedings most patients had suffered from family conflicts due to poor appetite/low body weight for many years. At the time of the interview three quarters of the patients reported a benefit from nocturnal tube feedings not only with regard to improved body weight but also with regard to lower tension at home. None of the patients stopped the intake of normal food, and only few patients mentioned bodily complaints or negative social experiences (stigma). Therefore, the patients' overall personal assessment towards gastrostomy feeding was positive: 17 out of 18 patients said that in retrospect the decision for gastrostomy feeding was right. Conclusion: The patients' evaluation of the psychosocial aspects was in favour of nocturnal gastrostomy feeding. This should encourage the CF-doctor to use gastrostomy feeding more frequently than before.