Feeding tube use and complications in Prader‐Willi syndrome: Data from the Global Prader‐Willi Syndrome Registry

Abstract

AbstractGuidance on indications for, and types of, feeding tubes recommended in Prader‐Willi syndrome (PWS) is needed. A Global PWS Registry survey was developed to investigate nasogastric (NG) and gastrostomy (G) tube use and associated complications. Of 346 participants, 242 (69.9%) had NG‐tubes, 17 (4.9%) had G‐tubes, and 87 (25.1%) had both NG‐ and G‐tubes. Primary indication for placement was “feeding difficulties and/or poor weight gain” for both NG‐ (90.2%) and G‐tubes (71.2%), while “aspiration/breathing difficulties” was the procedural indication for 6.4% of NG‐tubes and 23.1% of G‐tubes. NG‐tubes were generally removed by age 6 months (NG Only: 82.9%; NG/G: 98.8%), while G‐tubes were often removed by age 2 years (G Only: 85.7%; NG/G: 70.5%). The severe complication rate from G‐tubes was 31.7% and from NG‐tubes was 1.2%. Overall, caregivers indicated the presence of an NG‐ or G‐tube had a positive effect on quality of life. Feeding difficulties in PWS are largely managed by NG‐tube alone. The severe complication rate from G‐tubes was about 25 times higher than from NG‐tubes; yet, G‐tube placement rates have generally increased. G‐tube placement puts individuals with PWS at risk for anesthesia and surgery‐related complications and should be considered judiciously by a multidisciplinary team.