Pletschko Thomas, Felnhofer Anna, Schwarzinger Agathe, Weiler Liesa, Slavc Irene, Leiss Ulrike
1 Department of Pediatrics and Adolescent Medicine, Medical University of Vienna, Vienna, Austria.
J Child Neurol. 2017 Jan;32(1):23-28. doi: 10.1177/0883073816669647. Epub 2016 Oct 6.
Given the increased survival rates in patients with pediatric central nervous system tumors, late effects such as treatment- and/or illness-related neurologic sequelae as well as neuropsychological deficits and social difficulties have moved into focus in follow-up care. In order to provide personalized treatment recommendations for pediatric brain tumor survivors, it is crucial not only to assess cognitive impairments but also to measure a patient's functional deficiencies, for example, restricted participation in everyday social activities. Thus, this article introduces the International Classification of Functioning-Children and Youth version (ICF-CY) as a conceptual framework for quantifying functional limitations and informing long-term care in pediatric neuro-oncology. A standardized self-report and proxy-report questionnaire for measuring participation is briefly discussed and specific recommendations based on so-called core sets for clinical practice in pediatric neuro-oncology are provided.
鉴于小儿中枢神经系统肿瘤患者生存率的提高，诸如治疗和/或疾病相关的神经后遗症以及神经心理缺陷和社交困难等晚期效应已成为后续护理的重点。为了为小儿脑肿瘤幸存者提供个性化的治疗建议，不仅评估认知障碍，而且测量患者的功能缺陷（例如，日常社交活动参与受限）至关重要。因此，本文介绍了《儿童和青少年功能国际分类》（ICF-CY）版本，作为量化功能限制并为小儿神经肿瘤学长期护理提供信息的概念框架。简要讨论了一份用于测量参与度的标准化自我报告和代理报告问卷，并提供了基于小儿神经肿瘤学临床实践所谓核心集的具体建议。
