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Survival rates of children with severe neurologic disabilities: a review
1Pediatric Long-Term Care Section, American Medical Directors' Association and Division of Neurology, Mercy Hospital and Medical Center, Chicago, IL, USA.
Insights
Children with neurologic disabilities have better survival rates than previously reported. Pediatric skilled nursing facilities (SNFs) provide crucial care, improving outcomes for children with complex medical needs.
Area of Science:
- Pediatric Medicine
- Neurology
- Biostatistics
Background:
- Accurate survival rates for children with neurologic disabilities are vital for financial planning by insurance payers and pediatric skilled nursing facilities (SNFs).
- Previous survival data from California by Eyman presented pessimistic outcomes, contrasting with clinical observations.
Purpose of the Study:
- To re-evaluate and present accurate survival rates for children with neurologic disabilities.
- To compare the study's findings with existing literature, particularly the California data.
- To identify factors contributing to improved survival rates.
Main Methods:
- Retrospective review of survival data for children with neurologic disabilities.
- Comparison of survival rates with previously published data, including California studies.
- Analysis of patient care settings and potential methodologic differences.
Main Results:
- The study found significantly better survival rates compared to Eyman's California data.
- 10-year survival for the most-disabled group was 73% in this study, versus 32%-45% in California reports.
- 8-year survival for the most-disabled group was 73% in this study, versus 38%-63% in California reports.
Conclusions:
- Children with neurologic disabilities, particularly those in SNFs receiving prompt medical care, exhibit higher survival rates than previously reported.
- The study highlights potential methodologic and statistical errors in prior California data.
- Findings underscore the importance of specialized care settings like SNFs in improving pediatric survival outcomes.
Abstract:
Knowledge of accurate survival rates of children with neurologic disabilities is important for third-party insurance payers planning future medical expenses. This is of particular importance to pediatric skilled nursing facilities (SNFs) that depend on financial support from governmental sources. Eyman published survival rate results from California that were extremely pessimistic and not in keeping with our clinical impressions. This led us to conduct a thorough review of our survival rates, which were much better than those reported by Eyman. Since the publication of our study, a large number of reports have appeared from many different countries, as well as further information from California using an expanded database. The survival rate data that we obtained remain consistently better than that in most recent reports. In the California results, 10-year survival rates for the most-disabled group (group 1) were reported to be 32% in 1993 and 45% in 1998, compared with 73% in our study. Eight-year survival rates for group 1 from California were reported to be 38% in 1993 and 63% in 2000, compared with our finding of 73%. The reasons for our better survival rates include the fact that all of our patients were in SNFs, where prompt medical care for acute illnesses was always provided, whereas only 3.5% of the study group was in SNFs in California. Also, the California data contained many methodologic and statistical errors, which are reviewed here.
