Fernandez Conrad, Fraser Graeme A M, Freeman Carolyn, Grunfeld Eva, Gupta Abha, Mery Leslie Stephen, De Pauw Sonja, Schacter Brent
Departments of Pediatrics and Bioethics, Dalhousie University and IWK Health Centre , Halifax, Nova Scotia, Canada .
J Adolesc Young Adult Oncol. 2011 Apr;1(1):53-59. doi: 10.1089/jayao.2010.0008.
Adolescents and young adults (AYA) with cancer and survivors of cancer in childhood, adolescence, and young adulthood are a constituency facing disparities of care affecting quality of life and other outcomes in many parts of the world. In Canada, this situation occurs in a nation with population-based cancer control programs and a government-funded healthcare system. The Canadian Task Force on Adolescents and Young Adults with Cancer was established in 2008 with a mission to ensure that AYA-aged Canadians with cancer and AYA survivors of cancer have prompt, equitable access to the best care, and to establish and support research to identify how their health outcomes and quality of life can be optimized. Following a survey of existing services, and in consultation with survivors, healthcare professionals, and policy makers, the Task Force identified principles of care, priority issues for research and the establishment of outcome metrics, and strategies for implementing change that are designed to improve the outcomes and quality of life of this specific cohort of patients and survivors with unique developmental needs. The six broad recommendations highlight the need for age-appropriate psychosocial, survivorship, palliative, and medical care as well as research to redress inequities in the care provided to this group relative to both younger and older cancer patients. Improved care for this group will enable individuals to reach their full potential as productive, functioning members of society, and will provide economic and other societal benefits.
患有癌症的青少年及青年(AYA)以及童年、青少年和青年时期患癌的幸存者,是一个在世界许多地区面临护理差异的群体,这些差异影响着他们的生活质量和其他结果。在加拿大,这种情况发生在一个拥有基于人群的癌症控制项目和政府资助医疗体系的国家。加拿大青少年及青年癌症患者特别工作组于2008年成立,其使命是确保加拿大AYA年龄段的癌症患者和癌症幸存者能够迅速、公平地获得最佳护理,并开展和支持研究,以确定如何优化他们的健康结果和生活质量。在对现有服务进行调查,并与幸存者、医疗专业人员和政策制定者协商后,特别工作组确定了护理原则、研究的优先问题和结果指标的制定,以及旨在改善这一具有独特发育需求的特定患者和幸存者群体的结果和生活质量的实施变革策略。这六项广泛的建议强调了提供适合年龄段的心理社会、康复、姑息和医疗护理的必要性,以及开展研究以纠正相对于年轻和老年癌症患者而言,该群体在护理方面存在的不公平现象。改善对这一群体的护理将使个人能够充分发挥其潜力,成为有生产力、正常生活的社会成员,并将带来经济和其他社会效益。