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Survival rates among children with severe neurologic disabilities
A V Plioplys1, I Kasnicka, S Lewis
1Mercy Hospital and Medical Center and Department of Neurology, University of Illinois, Chicago 60616, USA.
Insights
Survival rates for severely neurologically disabled children in skilled nursing facilities are significantly better than previously reported. Intense medical management and gastrostomy tube feeding contribute to improved outcomes for these children.
Area of Science:
- Pediatric critical care
- Neurology
- Public health
Background:
- Survival rates for severely neurologically disabled children in pediatric skilled nursing facilities (PSNFs) have not been extensively studied.
- Previous studies reported lower survival rates for this vulnerable population.
Purpose of the Study:
- To determine survival rates in subpopulations of severely neurologically disabled children residing in PSNFs.
- To compare these survival rates with previously published data.
Main Methods:
- A retrospective study of 447 children across six severely disabled groups in three PSNFs (1986-1996).
- Survival rates were correlated with clinical parameters and comorbidities.
- Analysis included age stratification (infants, children, adolescents).
Main Results:
- Significantly improved 8-year survival rates were observed compared to prior studies (e.g., Group 1: 66% vs. 5%; Group 2: 89% vs. 22%).
- Presence of other significant diseases was the primary determinant of reduced survival (10-year survival: 45% with comorbidities vs. 90% without).
- Gastrostomy tube feeding was associated with better 10-year survival (78%) than nasogastric tube feeding (41%), independent of comorbidities.
Conclusions:
- Severely neurologically disabled children in PSNFs exhibit substantially better survival rates than previously reported.
- Intensified medical management in PSNFs likely contributes to improved outcomes.
- Gastrostomy tube feeding is linked to superior long-term survival in this population.
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.