患有儿童期和青少年癌症的年轻人的保健过渡:来自EU-CAYAS-NET联盟的建议

Jikke Wams, Elvira C van Dalen, Jaap G den Hartogh, Maria Otth, Tiago Costa, Jan Willem Gorter, Alied M van der Aa-van Delden, Anna Panasiuk, Bernhard Wörmann, Claire Berger, Edit Bardi, Elna Hamilton Larsen, Emma Potter, Esther Lasheras Soria, Gill Levitt, Gisela Michel, Helena J H van der Pal, Jelena Roganovic, Judith de Bont, Lieselotte Wauters, Kylie B O'Brien
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引用次数: 0

摘要

儿童和青少年癌症幸存者(诊断时年龄:0-21岁)面临长期健康并发症的风险增加,在功能和社会参与方面的结果不太有利。此外,他们在离开儿科或青少年服务后,往往没有充分的保健过渡到适当的服务,而随着他们成年,后期影响的发生率和严重程度也会增加。为了应对过渡挑战,我们制定了基于证据的建议,作为欧洲青年癌症幸存者网络项目的一部分,其目标是改善向长期幸存者和成人护理的保健过渡,确保连续性并满足幸存者的独特需求。利用循证方法,一个国际和多学科指南小组制定了卫生保健过渡的临床实践指南。患者代表参与了开发过程的所有步骤。指南小组系统地回顾了PubMed 1990年1月1日至2025年4月8日的数据,并用GRADE方法对证据进行分级。此外,在制定建议时还考虑了现有的指导方针和患者、家长和保健提供者的观点。在确定的2538条引用中,86篇文章符合纳入标准,重点关注诊断时21岁以下癌症幸存者或慢性病患者(如糖尿病和哮喘)的医疗保健转变,以从这些人群中推断出见解。证据的质量从极低到中等不等。收集了独特的需求和偏好,确保对建议采取全面和以患者为中心的方法。总共为儿童和青少年癌症幸存者的保健过渡拟订了44项强有力的建议。我们整合了现有证据和多方利益相关者的专业知识,并制定了可操作的建议,以支持儿童和青少年癌症幸存者的顺利过渡,并改善他们成年后的生活。实施这一准则将通过解决这一弱势群体的具体保健过渡需求,提高护理质量和生活质量。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Health-care transitions for young people living beyond childhood and adolescent cancer: recommendations from the EU–CAYAS–NET consortium
Childhood and adolescent cancer survivors (age at diagnosis: 0–21 years) face increased risk for long-term health complications and less favourable outcomes in terms of functioning and social participation. Moreover, they often experience inadequate health-care transitions to appropriate services after leaving paediatric or adolescent services, while the prevalence and severity of late effects increase as they become adults. To address transition challenges, we developed evidence-based recommendations as part of the European Network of Youth Cancer Survivors project with the goal to improve health-care transitions to both long-term survivorship and adult care, ensuring continuity and addressing survivors’ unique needs. Using evidence-based methods, an international and multidisciplinary guideline panel developed a clinical practice guideline for health-care transitions. Patient representatives were included at all steps of the development process. The guideline panel systematically reviewed data from PubMed from Jan 1, 1990, to April 8, 2025, and graded the evidence with the GRADE methodology. In addition, existing guidelines and perspectives from patients, parents, and health-care providers were considered when formulating recommendations. Of 2538 citations identified, 86 articles met the inclusion criteria, focusing on health-care transitions for cancer survivors up to age 21 years at diagnosis or for patients with chronic conditions (eg, diabetes and asthma) to extrapolate insights from these populations. The quality of evidence varied from very low to moderate. Unique needs and preferences were captured, ensuring a comprehensive and patient-centred approach to the recommendations. In total, 44 strong recommendations were formulated for health-care transitions of childhood and adolescent cancer survivors. We integrated existing evidence and multistakeholder expertise and developed actionable recommendations that support smooth transitions for childhood and adolescent cancer survivors and improve their lives as adults. Implementing this guideline will enhance the quality of care and improve quality of life by addressing the specific health-care transition needs of this vulnerable population.
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