Dataset related to article "BEING ADULTS WITH CEREBRAL PALSY: RESULTS OF A MULTICENTER ITALIAN STUDY ON QUALITY OF LIFE AND PARTICIPATION"

For each participant, we collected the following:<br> – Principal clinical details.<br> – Level of severity (I best–V worst) according to the Gross Motor Function Classification System (GMFCS) Manual Ability Classification System (MACS) , the Communication Function Classification System (CFCS).<br> – Neuroradiological documentation classified in accordance with the Surveillance of Cerebral Palsy in Europe working group <br> After receiving written informed consent, participants completed the following protocol:<br> – Specific questionnaires to assess: (a) Quality of life: the SF-36 (b) Participation: LIFE-H (c) Socio-economic status (SES, Hollingshead index <br> – A semi-structured interview based on parameters agreed between the various centers and designed to obtain information concerning(a) General state of health and aspects of daily life relating to<br> their occupation, free time, and autonomy; (b) Affective relations and capacity for self-observation of<br> their inner world, investigating emotions, affections, and feelings, such as anger, sadness, and happiness针对每名研究对象，我们收集了以下信息： – 核心临床资料； – 根据粗大运动功能分级系统（Gross Motor Function Classification System, GMFCS）、手功能分级系统（Manual Ability Classification System, MACS）以及沟通功能分级系统（Communication Function Classification System, CFCS）划分的严重程度等级（I级为最轻，V级为最重）； – 按照欧洲脑瘫监测工作组（Surveillance of Cerebral Palsy in Europe working group）制定的标准进行分类的神经影像学资料。 在获取研究对象的书面知情同意后，所有研究对象完成了以下研究流程： – 用于评估以下维度的专用问卷：(a) 生活质量：采用SF-36量表；(b) 参与度：采用LIFE-H量表；(c) 社会经济地位（Socio-economic Status, SES），即霍林斯赫德指数； – 一项由多中心共同商定参数的半结构化访谈，旨在收集以下信息：(a) 总体健康状况，以及与职业、闲暇活动和自主能力相关的日常生活维度；(b) 情感关系与对内心世界的自我观察能力，涵盖愤怒、悲伤、喜悦等情绪、情感与感受的探查。