Cerebral Palsy Life Expectancy: Discrepancies between Literature and Community Data

Abstract

Cerebral palsy patients and their families need to predict patients’ length of survival for emotional, medical, and financial planning reasons. Providing these estimations is wrought with challenges, some of which are specific to the significant variations in survival that are observed amongst this group of patients. The statistical models that are used to assess life expectancy are plagued by mathematical limitations, faulty assumptions, and the exclusion of factors that are critical to prognosis. In this commentary, we provide evidence that the medical community generally underestimates life expectancy in cerebral palsy. With medical innovations extending lives, some of the literature on life expectancy is outdated, but old data does not explain the extent of the discrepancies we see between what we observe in our communities and what is espoused in the literature. Herein, we offer potential explanations for these discrepancies and call on the medical community to improve predictions of survival in cerebral palsy patients so that they can get the care they need. The harms and dangers of biased life expectancy data cannot be overstated, and cerebral palsy patients are consistently living longer than the current literature would suggest. We demonstrate here why life expectancy models underestimate cerebral palsy survival in the community.