Percutaneous endoscopic gastrostomy tube placement in children with neurodevelopmental disabilities. Parents' perspectives

OBJECTIVE: To study the attitudes of parents toward percutaneous endoscopic gastrostomy (PEG) tube placement and identify contributing factors to their negative attitudes.

METHODS: Thirty consecutive parents were included retrospectively through a single endoscopy unit at the King Abdulaziz University Hospital, Jeddah, Kingdom of Saudi Arabia from January to July 2012. A structured 25-item questionnaire was designed to examine their demographics, attitudes, and experience with the PEG procedure.

RESULTS: Patients' ages were 3-19 years (mean: 10.2), mostly with severe cerebral palsy (77%). Their PEG tubes were inserted 2-144 months (mean: 39) prior to the encounter. Only 43% of the parents felt informed and most (73%) had negative attitudes toward the procedure, which was associated with significant delays (p=0.016). After the procedure, most parents (67%) reported a better-than-expected experience, which was associated with their information levels (p=0.03). Most parents (80%) regretted not having the PEG tube placed earlier. This depended on their information level, as those who were not informed were more likely to have strong regrets when compared to those informed (82% versus 42%, p=0.008).

CONCLUSION: Most parents are not well-informed regarding the PEG procedure, which affects their expectations and experiences. Most parents found the experience better than what they expected and regretted not having carried it out earlier.