脑瘫预期寿命:文献与社区数据的差异

Craig H Lichtblau
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摘要

脑瘫患者和他们的家人需要预测患者的生存时间的情绪,医疗和财务规划的原因。提供这些估计是充满挑战的,其中一些是特定于在这组患者中观察到的生存的显着变化。用于评估预期寿命的统计模型受到数学限制、错误假设和排除对预后至关重要的因素的困扰。在这篇评论中,我们提供的证据表明,医学界普遍低估了脑瘫患者的预期寿命。随着医疗创新延长寿命,一些关于预期寿命的文献已经过时,但旧数据并不能解释我们在社区中观察到的情况与文献中所支持的情况之间的差异程度。在此,我们为这些差异提供了可能的解释,并呼吁医学界提高脑瘫患者的生存预测,以便他们能够得到他们需要的护理。有偏见的预期寿命数据的危害和危险不能被夸大,脑瘫患者的寿命一直比目前文献所显示的要长。我们在这里证明了为什么预期寿命模型低估了社区中脑瘫的存活率。
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Cerebral Palsy Life Expectancy: Discrepancies between Literature and Community Data
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 With medical innovations extending lives, some of the literature on life expectancy is outdated, but old data does not explain the extent of the discrepancies we see between what we observe in our communities and what is espoused in the literature.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.
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