Prediction about a child’s quality of life (QoL) is one of the most solicited pieces of information parents seek from clinicians in specialized care settings. A child’s future life quality is often a key factor in whether to pursue life-sustaining intervention. Also, parents of children with new diagnoses of neurodevelopmental sequelae wish to know whether their child will have a reasonable chance at a good life. The article by Dorner et al. underscores the importance of balancing emotional support for parents with accurate communication about future disability in the neonatal intensive care unit. In the context of these important conversations, the prognosis ‘poor QoL’ is often conveyed. This prognosis represents embedded biases about severe childhood disability with little known benefits to the family or the child. The problem of whether to pursue further life-sustaining intervention for unstable newborn infants is rarely served by prognosticating future QoL. Ethical frameworks on when to pursue resuscitation or life-saving interventions have been outlined elsewhere. The focus here is only the role of the ‘QoL prognosis’ in the decision. Even though levels of cognitive and motor problems can often be predicted based on magnetic resonance imaging results, abnormal electroencephalogram findings, and a neonate’s hospital course, the happiness and acceptance a child will achieve in their families and communities cannot. The consequences of an infant’s neurodevelopmental disability to a family might include initial parental grief, followed by lifelong high intensity caregiving burden and potential financial strain. In order to support a parent’s decisionmaking about life-saving interventions, clinicians must distill a complex picture of the child’s developmental disability into a digestible (but accurate) form. This task might seem more surmountable by using the prognosis of poor QoL. The difficulty is that when this ‘prognosis’ is communicated, families hear: ‘If your child survives, they will have a bad life, and by extension you will too’. Research in keeping with the World Health Organization’s definition of QoL (a child or parent’s perception of their life) shows that disability severity has little relationship to life quality. Instead, emotional well-being, peer interactions, parental adaptation, and community support are much more powerful predictors of whether a child is likely to grow up to have a good life. When conveying a prognosis of severe disability and its consequences to child and family, the solution is a simple one. Refrain from confounding the concept of a good QoL with the prognosis of cognitive or physical disability. A second problem relating to communicating a prognosis of poor QoL relates to how it hampers parents’ ability to adapt. Parents of children with severe disabilities have articulated anecdotally and through research that poor QoL prognosis hampered or delayed their ability to see, or invest in, their child’s happiness and acceptance by others. Child outcomes that involve feeding tubes to sustain nutrition, wheelchairs to get around, or communication devices to be understood, have little sound empirical relationship to poor QoL. Conversely, equating disability with poor QoL can influence families into believing that every adaptive device or mobility aid are signs of failure towards the achievement of a good life. The opposite is also true, clinicians can facilitate the positive adaptations that families truly need for good longterm outcome. The findings of Dorner et al. were edifying in showing that parents ‘would adapt their parenting approach to make sure their child was set up to succeed’, knowing that the picture of ‘success’ might be different than the one initially imagined. A great deal of clinical decision-making or parental adaptation can hinge on knowing as much as possible about a child’s future. However, QoL is as hard to predict for children with severe disabilities as it is for other children. A good life cannot be predicted from a brain scan.

中文翻译：

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脑部扫描无法预测生活质量

对儿童生活质量 (QoL) 的预测是父母在专业护理环境中从临床医生那里寻求的最受欢迎的信息之一。孩子未来的生活质量往往是是否寻求维持生命干预的关键因素。此外，新诊断出神经发育后遗症的孩子的父母希望知道他们的孩子是否有合理的机会过上美好的生活。多纳等人的文章。强调了在新生儿重症监护病房中平衡对父母的情感支持与关于未来残疾的准确沟通的重要性。在这些重要对话的背景下，经常传达“生活质量差”的预测。这种预后代表了对严重儿童残疾的内在偏见，对家庭或孩子几乎没有好处。是否对不稳定的新生儿进行进一步的维持生命干预的问题很少通过预测未来的 QoL 来解决。关于何时进行复苏或挽救生命的干预措施的伦理框架已在别处概述。这里的重点只是“QoL 预测”在决策中的作用。尽管通常可以根据磁共振成像结果、异常脑电图结果和新生儿的医院课程来预测认知和运动问题的程度，但孩子在家庭和社区中获得的幸福感和接受度却无法预测。婴儿神经发育障碍对家庭的后果可能包括最初的父母悲伤，随后是终生的高强度照料负担和潜在的经济压力。为了支持父母关于挽救生命的干预措施的决策，临床医生必须将儿童发育障碍的复杂情况提炼成易于理解（但准确）的形式。通过使用糟糕的 QoL 的预测，这项任务似乎更容易克服。困难在于，当传达这种“预后”时，家人会听到：“如果您的孩子幸存下来，他们将过上糟糕的生活，而您也将如此”。符合世界卫生组织对 QoL（儿童或父母对其生活的看法）定义的研究表明，残疾的严重程度与生活质量几乎没有关系。相反，情绪健康、同伴互动、父母适应和社区支持是更强大的预测孩子是否有可能长大后过上美好生活的因素。当向儿童和家庭传达严重残疾的预后及其后果时，解决方案很简单。不要将良好 QoL 的概念与认知或身体残疾的预后混为一谈。与传达不良 QoL 预后相关的第二个问题与它如何阻碍父母的适应能力有关。严重残疾儿童的父母通过轶事和研究表明，糟糕的 QoL 预后阻碍或延迟了他们看到或投资于他们孩子的幸福和被他人接受的能力。涉及喂食管维持营养、四处走动的轮椅或需要理解的通信设备的儿童结果与较差的 QoL 几乎没有可靠的经验关系。反过来，将残疾等同于糟糕的 QoL 会影响家庭相信每个自适应设备或移动辅助设备都是无法实现美好生活的迹象。反之亦然，临床医生可以促进家庭真正需要的积极适应，以获得良好的长期结果。Dorner 等人的研究结果。表明父母“会调整他们的养育方法以确保他们的孩子成功”，知道“成功”的画面可能与最初想象的不同。大量的临床决策或父母的适应取决于尽可能多地了解孩子的未来。然而，严重残疾儿童的 QoL 与其他儿童一样难以预测。脑部扫描无法预测美好生活。