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Prognosis for survival and improvement in function in children with severe developmental disabilities
D Strauss1, S Ashwal, R Shavelle
1Department of Statistics, University of California, Riverside 92521, USA.
Insights
Prognostic data for children with severe developmental disabilities indicates that tube-fed infants unable to lift their heads face high early mortality risk. However, survivors show significant improvement potential by age five.
Area of Science:
- Pediatric Medicine
- Developmental Pediatrics
- Prognostic Studies
Background:
- Severe developmental disabilities present complex challenges in predicting patient outcomes.
- Limited data exists on long-term survival and clinical improvement for infants with severe developmental disabilities.
Purpose of the Study:
- To establish prognostic data for survival and clinical improvement in children with severe developmental disabilities.
- To provide a clearer understanding of outcomes for high-risk pediatric populations.
Main Methods:
- A 13-year follow-up study analyzed cohorts of children evaluated before age one.
- Data from the California Department of Developmental Services (1980-1993) was utilized.
- Cohorts were defined by mobility and need for tube feeding.
Main Results:
- Tube-fed children unable to lift heads by 3-12 months had a high early mortality risk (median life expectancy 3.2 years).
- Approximately one-third of survivors showed condition improvement within two years.
- Most significant outcomes (improvement or death) occurred by this age.
Conclusions:
- Prognoses for survival and improvement are largely clarified by age five.
- Children surviving to age five, even in the lowest functioning group, have a 60% chance of surviving an additional five years.
- These prognostic probabilities are valuable for parents and healthcare providers.
Objective:
To derive prognostic data for survival and clinical improvement in children with severe developmental disabilities.
Study Design:
A 13-year follow-up study of several cohorts of children initially evaluated before their first birthday. The outcomes studied were survival and improvement in condition. Methods were used to overcome limitations in previously published work on the same California data base. Of the 11,912 children who received services from the California Department of Developmental Services between January 1980 and December 1993, we focused on three cohorts defined according to mobility and need for tube feeding.
Results:
Children who were tube fed and unable to lift their heads by ages 3 to 12 months were at high risk for early death, with a median remaining life expectancy of 3.2 years. Of those who survived an additional 2 years, the condition of about one third improved. A substantial majority of those who either showed improvement or died had done so by that age.
Conclusion:
By age 5 years, the prognoses for survival and improvement have to a large extent been clarified. For children who survive to age 5 years, even those in the lowest functioning cohort have a 60% chance of surviving an additional 5 years. Detailing the probabilities of various outcomes at various ages should be useful to parents, pediatricians, and others concerned with children with developmental disabilities.