Early decision of gastrostomy tube insertion in children with severe developmental disability: a current dilemma

Background: Healthcare professionals advise earlier gastrostomy tube (GT) placement in children with severe developmental disabilities, marked feeding disorders and risk of malnutrition. However, a delay in acceptance of the procedure by parents/guardians is the main issue of concern. The present study aimed to investigate: (i) parental satisfaction with GT feeding and whether parents/carers would have accepted earlier GT placement and (ii) subsequent nutritional outcome. Methods: Twenty-six disabled children with GT feeding were recruited. A structured questionnaire by telephone was held to record parental perceptions of GT (mainly satisfaction with the procedure and patient management). A longitudinal study (0-6-12 months) was designed to investigate anthropometric outcome. Nutritional support mode and GT-related complications were also recorded. Results: Parents/carers showed high satisfaction (91%). Furthermore, 87% recognised that they would have accepted an earlier placement of the GT had they anticipated the outcome. Patient management and family dynamics were acknowledged to have improved considerably. Nutritional assessment demonstrated a positive trend in weight. Height improved significantly 6 months post-implantation (P = 0.045) and body mass index improved after 12 months (P = 0.041). When comparing nutritional outcome between children in whom the GT was placed before 18 months of age and those in whom it was placed later, height was found to improve significantly in the first group (P = 0.04). Conclusions: Most parents/carers would have agreed to earlier GT feeding of their children had they acknowledged its benefits. Although nutritional response was positive, it was less so than the parental perception of children's overall improvement. Growth rates were significantly increased when GT was placed early in life.