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Survival in cerebral palsy: the role of severity and diagnostic labels
1Department of Epidemiology and Medical Statistics, St Bartholomew's and Royal London School of Medicine, UK.
Insights
Children with cerebral palsy (CP) and an additional diagnosis have significantly lower survival rates. This highlights the impact of co-occurring conditions on mortality in pediatric CP populations.
Area of Science:
- Neurology
- Pediatrics
- Public Health
Background:
- Cerebral palsy (CP) is a group of disorders affecting movement and posture, impacting millions of children globally.
- Understanding survival rates and causes of death in CP is crucial for improving care and support.
- Population-based registers are vital for epidemiological studies on CP.
Purpose of the Study:
- To review survival and causes of death in a population-based cerebral palsy (CP) cohort.
- To assess the impact of additional diagnostic labels on mortality in children with CP.
- To analyze the relationship between motor severity, additional diagnoses, and survival outcomes.
Main Methods:
- Utilized a population-based register of 584 children with CP in South East England (born 1980-1986).
- Included children who died and were registered, or eligible children whose cause of death was CP.
- Excluded cases with postneonatal onset, non-cerebral motor causes, or minimal motor involvement.
Main Results:
- Thirty-nine of 584 children (6.7%) died by end of 1995.
- Survival was significantly lower for children with an additional diagnostic label (86.2%) compared to those without (96.3%; P=0.01).
- CP was listed as a cause of death on only 24 of 37 available death certificates.
Conclusions:
- Additional diagnostic labels are associated with significantly reduced survival in children with cerebral palsy.
- The findings suggest that co-occurring conditions play a critical role in the mortality of pediatric CP.
- Further research is needed to understand the complex interplay between CP, additional diagnoses, and survival outcomes.
Abstract:
The aim of this study was to review survival and certified causes of death of 584 children on a population-based register of cerebral palsy (CP), and to assess the impact on these of an additional diagnostic label. The register, established in 1985, comprised children with CP born from 1980 to about 1987 who were resident at the time of notification in the south-east of England in a region with between 3 and 4 million population, defined by the boundaries of the regional health authority (North East Thames Regional Health Authority). The current report concerns deaths of residents born between 1980 and 1986, who had been registered but had later died, as well as of eligible children who had not been registered while alive but whose cause of death was CP. These were identified at the Office of Population Censuses and Surveys who also supplied copies of death certificates for this study. For children notified while alive, information about motor severity and other diagnostic labels was sought at entry to the register and again between 3.5 and 4 years and between 7 and 8 years. For this study, children known to have a postneonatal onset, a progressive or non-cerebral cause of motor signs, or minimal motor involvement were excluded. Thirty-nine of 584 children included in this study had died by the end of 1995. No deaths had occurred in children known to have less than four-limb involvement. Survival of the group known to have an additional diagnostic label was significantly lower (86.2%) than that of the group with no known label (96.3%; P=0.01), and remained lower, although not significantly, if only those with severe four-limb involvement were compared (75.3% versus 92.4%; P=0.2). The greater severity of limb involvement in those with an additional diagnosis may not account for this difference. Of the 37 children with death certificates available, CP was mentioned as a cause in only 24.