NOCTURNAL GASTROSTOMY FEEDING IN CYSTIC-F IBROSIS - THE PATIENTS EXPERIENCE AFTER ONE AND 3 YEARS

Background: The efficacy of nocturnal feeding using a percutaneous end oscopic gastrostomy (PEG) for the treatment of malnourished patients w ith cystic fibrosis has been demonstrated from a medical point of view . Psychosocial aspects, however, have not been extensively covered in the literature. Methods: CF patients aged 8 to 26 years who had receiv ed a PEG tube were interviewed 3 months (n = 18, results recently publ ished), 1 year (n = 10), and 3 years (n = 5) after the start of noctur nal feedings. Results: After one year of followup, 7 of tke 10 patient s mentioned an improved physical activity, and 6 patients experienced a generally better health. Positive comments from peers regarding the improved body shape were reported by most patients, whereas only 3 pat ients mentioned complaints and minor side effects. In retrospect, eigh t of the ten patients clearly felt positive about the decision to have a PEG. During the three-year interviews, all patients reported a sust ained re duction of pressure and tension at home and in the family. Tw o patients had tried to wean themselves from the tube, but without suc cess. The cost/benefit ratio of nocturnal PEG feedings was regarded po sitive by all patients. Conclusion: These data show that in spite of t he invasive procedure, most patients speak in favour of long-term PEG feedings due to clear improvements in their quality of life. Therefore , this procedure should be considered more often for the treatment of malnourished patients with cystic fibrosis.