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

Sanjay Mahant ^1*, Jeremy N Friedman ¹, Bairbre Connolly ¹, Cristina Goia ² and Colin Macarthur ³

¹ The Hospital for Sick Children, The University of Toronto, Canada
² The Hospital for Sick Children, Canada
³ Bloorview Kids Rehab; The Hospital for Sick Children, The University of Toronto, Canada

^* To whom correspondence should be addressed. E-mail: sanjay.mahant{at}sickkids.ca.

Accepted 1 May 2009

Abstract

Objective: To assess the 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 neurologic 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 5 of whom underwent G and GJ tube insertion respectively, were enrolled with a median age of 591 days. Forty-two had a static neurologic and 8 had a progressive neurologic disorder. 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 neurologic 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.