Survival rates among children with severe neurologic disabilities

Abstract

Background: This study was done to determine survival rates in subpopulations of severely neurologically disabled children who reside in pediatric skilled nursing facilities and to compare these survival rates with those in previously published studies.

Methods: Data were collected at three pediatric skilled nursing facilities over the 1986 to 1996 decade. The total study population numbered 447. We studied in detail six groups of the most severely disabled children and correlated their survival rates with clinical parameters and the presence of other significant diseases.

Results: The survival rates in our six groups of severely disabled children were significantly better than those previously reported. In group 1, our 8-year survival rate was 66%, as compared with 5% in the previous study. In group 2, our 8-year survival rate was 89%, versus 22% in the previous study. We obtained better survival rates in all six groups studied, irrespective of the analysis including children less than 1 year old, between 1 year and 15 years old, or more than 15 years old. The most significant determinant for reduced survival was the presence of other significant diseases. Those with other significant diseases had a 10-year survival rate of 45%, whereas those who were relatively healthy had a survival rate of 90%. Patients who received gastrostomy tube feedings had a better 10-year survival rate than those fed by nasogastric tube (78% vs 41%). This difference was independent of the presence of other significant medical diseases.

Conclusions: Our results show substantially better survival rates than those previously reported. These improved results are most likely related to much more intense medical management of severely disabled children in skilled nursing facilities than at home or in other residential settings. Our study also showed a significantly better survival rate for those fed by gastrostomy tube as compared with nasogastric tube.