Tubefeeding and Mortality in Children with Severe Disabilities and Mental Retardation

Objective: To study the contribution of tubefeeding to mortality for children with severe disabilities and mental retardation. Previous research has suggested an association between tubefeeding and mortality. However, risk has never been determined using population-based data or defined in regard to patient variables.

Methods: Retrospective analysis of a comprehensive statewide data set comprised of 4921 children with severe disabilities and mental retardation living in community and congregate care settings. The outcome measure was mortality; primary study variables included the presence of a feeding tube, measures of functional independence, type of residence, and medical comorbidity.

Results: There were four findings. First, the use of a feeding tube was associated with virtually every disability. Second, when no study variables were controlled, statistically significant differences in mortality rates were noted between children who were tubefed and those who were not. The relative risk of mortality associated with use of a feeding tube was 2.1. Third, the use of a feeding tube was associated with a reduction in relative risk of mortality in children with tracheostomy (relative risk of mortality: .55). However, this association did not achieve statistical significance. Fourth, when study variables were controlled in a multivariate analysis, feeding tube use was associated with no identifiable increase in mortality among children with very severe disabilities, but was associated with an approximated doubled mortality rate among those with less severe disabilities.

Conclusions: We hypothesize that the increased mortality associated with tubefeeding may be attributable to a differential increase in pulmonary disease secondary to overly vigorous nutritional maintenance and subsequent aspiration after tube placement. For children with tracheostomy this risk may be reduced. If tracheostomy proves to be associated with a relatively more favorable outcome for tubefeeding, we hypothesize that it would reflect the benefits of tracheostomy in allowing access to the airway for suctioning and ventilation. Given the observed higher mortality rates among the less severely disabled children who are tubefed and the substantial costs associated with tubefeeding, a prospective, controlled study may be clinically indicated, ethically justifiable, and economically warranted.