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Published on: October 14, 2022
Mortality in pediatric hydrocephalus
Hannah M Tully1,2,3, Dan Doherty3,4, Mark Wainwright1,2,3
1Division of Pediatric Neurology, Seattle Children's Hospital, Seattle, WA, USA.
Insights
Most deaths in childhood-onset hydrocephalus are due to comorbidities, not the condition itself. Goals-of-care decisions and clinician guidance significantly influence end-of-life trajectories for these patients.
Area of Science:
- Pediatric Neurology
- Neurodevelopmental Disorders
- Medical Ethics
Background:
- Childhood-onset hydrocephalus is a complex condition requiring long-term management.
- Understanding mortality factors is crucial for improving patient outcomes and care planning.
Purpose of the Study:
- To investigate the roles of medical comorbidities and goals-of-care decisions in mortality among individuals with childhood-onset hydrocephalus.
- To analyze the circumstances surrounding death in this population.
Main Methods:
- Retrospective cohort study of 1705 individuals with childhood-onset hydrocephalus.
- Analysis of medical records, death records, and internet sources.
- Cox regression for risk factor analysis and qualitative analysis of death circumstances.
Main Results:
- Mortality rates did not differ significantly by demographics, though non-White and Hispanic individuals had higher proportions of deaths.
- Most deaths were attributed to medical comorbidities, with few directly related to hydrocephalus or shunt complications.
- Goals-of-care decisions, including forgoing treatment and shifts to comfort care, influenced mortality, particularly when aligned with predicted poor outcomes.
Conclusions:
- Individuals with childhood-onset hydrocephalus are more likely to die with the condition than from it.
- Medical comorbidities and end-of-life care decisions, guided by clinicians, are significant factors in mortality.
- Emphasizes the complexity of medical decision-making in pediatric neurodevelopmental disorders.
Aim:
To clarify the extent to which medical comorbidities and goals-of-care decisions influence death among individuals with childhood-onset hydrocephalus.
Method:
This was a retrospective cohort study of 1705 individuals (759 males, 946 females, mean age 11y 5mo, SD 6y 6mo, range 0-37y 7mo at last follow-up) with childhood-onset hydrocephalus, of whom 88 (5.2%) were deceased. Existing medical records, death records, and publicly available internet sources were analyzed. We estimated hazard ratios for putative risk factors through Cox regression based upon 10 529 person-years of data and quantitatively and qualitatively analyzed the circumstances surrounding each death.
Results:
Mortality did not differ statistically by demographic factors, although higher proportions of non-White and Hispanic individuals were deceased. Most deaths were related to medical comorbidities rather than hydrocephalus itself. Of the 14 deaths directly related to hydrocephalus, seven were caused by shunt complications and four occurred after decisions to forgo treatment, apparently in response to poor outcomes predicted by the medical team. Half the deaths were preceded by shifts to comfort-based care; however, these decisions appeared to substantially change the patient's clinical trajectory only half the time.
Interpretation:
Children are more likely to die with, rather than from, hydrocephalus. Our results emphasize the complexities of medical decision-making and the influence of clinicians in guiding these choices.
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