Tube feeding and quality of life in children with severe neurological impairment

Abstract

Objective: To assess the quality of life (QOL) of neurologically impaired children before and after gastrostomy (G) and gastrojejunostomy (GJ) tube insertion.

Design: This was a prospective longitudinal study of children with severe neurological impairment who underwent G or GJ tube insertion. At baseline, and at 6 and 12 months after tube insertion, parents rated (1) global QOL and health-related quality of life (HRQOL) using 10 cm visual analogue scales, with 10 representing maximal QOL and (2) HR-QOL using a questionnaire-based measure.

Results: Fifty patients, 45 and five of whom underwent G and GJ tube insertion, respectively, were enrolled with a median age of 591 days. Forty-two had a static neurological disorder, and eight had a progressive neurological disorder. The mean weight for age z score increased significantly over time: −2.8 at baseline and −1.8 at 12 months. The mean QOL and HR-QOL scores at baseline were 5.5 and 5.6 out of 10, respectively. There was no significant change in these scores at 6 and 12 months post-tube insertion. Children with a progressive versus a static neurological disorder had a significantly lower QOL over time. Ease of medication administration as well as feeding showed a significant improvement in scores from baseline to 12 months. Parents felt that the G and GJ tube had a positive impact on their child’s health at 6 months (86%) and 12 months (84%).

Conclusion: QOL as rated by parents did not increase following insertion of a G or GJ tube in neurologically impaired children. However, parents felt that the tube had a positive impact on their child’s health, particularly with regards to feeding and administration of medications.