Patient and public involvement in health care is considered indispensable in the way we conduct daily pediatric neurology practice, and in the development and utilization of health outcome measurements. This essay examines what meaningful quality evaluations and measurements are, describes the development of approaches to measuring health and outcomes, explores the potential applications of patient-reported outcome measures in pediatric neurology, and identifies opportunities and challenges in using patient-reported outcome measurements in our daily clinical practice. Recent developments have transformed our attitude on how to help children with neurological and developmental conditions and their families: specifically, (1) the recognition of the fundamental rights of children with disabilities; (2) the application of the framework of the International Classification of Functioning, Disability and Health by the World Health Organization that views health from the perspective of both biopsychosocial strengths and functional abilities; (3) the application of qualitative research methodologies to children with neurological conditions and their caregivers to elucidate what they consider essential for their own good health and well-being; and (4) the development of core outcome measurements sets for children and adults with various neurological and developmental conditions. In summary, supporting patients in their role as full partners in clinical care and research enables them to contribute their experiential knowledge and helps ensure that results are relevant and address patient needs, preferences, and priorities. Recognizing the importance of involving young people in their health management decisions has become central in contemporary medicine and needs to be part of the curriculum of all health care professionals.

在我们进行日常儿科神经病学实践以及开发和利用健康结果测量的方式中，患者和公众参与医疗保健被认为是必不可少的。本文探讨了有意义的质量评估和测量是什么，描述了测量健康和结果的方法的发展，探讨了患者报告的结果测量在儿科神经病学中的潜在应用，并确定了在我们的研究中使用患者报告的结果测量的机遇和挑战。日常临床实践。最近的事态发展改变了我们对如何帮助患有神经和发育障碍的儿童及其家庭的态度：具体而言，（1）承认残疾儿童的基本权利；(2) 世界卫生组织国际功能、残疾和健康分类框架的应用，从生物心理社会优势和功能能力的角度看待健康；(3) 将定性研究方法应用于患有神经系统疾病的儿童及其照顾者，以阐明他们认为对自身健康和福祉至关重要的东西；(4) 为患有各种神经和发育状况的儿童和成人开发核心结果测量集。总之，支持患者作为临床护理和研究的全面合作伙伴，使他们能够贡献他们的经验知识，并有助于确保结果是相关的，并解决患者的需求、偏好和优先事项。