Outcomes Research Branch, Healthcare Delivery Research Program, Division of Cancer Control and Population Science, National Cancer Institute, Rockville, Maryland.
UC Davis Comprehensive Cancer Center, Sacramento, California.
Pediatr Blood Cancer. 2019 Jan;66(1):e27486. doi: 10.1002/pbc.27486. Epub 2018 Oct 7.
Historically, adolescents and young adults (AYA) diagnosed with cancer have been an understudied population, and their unique care experiences, needs, and outcomes were not well understood. Thus, 10 years ago, the National Cancer Institute supported the fielding of the Adolescent and Young Adult Health Outcomes and Patient Experiences (AYA HOPE) study to address this gap. We recruited individuals diagnosed at ages 15 to 39 with germ cell, Hodgkin and non-Hodgkin lymphoma, acute lymphoblastic leukemia, and sarcoma from Surveillance, Epidemiology, and End Results cancer registries into the first multicenter population-based study of medical care, physical, and mental health outcomes for AYAs with cancer in the United States. This review of the 17 published manuscripts showed low awareness of clinical trials and substantial impact of cancer on financial burden, education and work, relationships and family planning, and physical and mental health. It highlights the feasibility of a longitudinal population-based study and key lessons learned for research on AYAs with cancer in and beyond the United States.
从历史上看，被诊断患有癌症的青少年和年轻人（AYA）是一个研究不足的群体，他们独特的护理经历、需求和结果尚未得到充分了解。因此，10 年前，美国国家癌症研究所支持开展青少年和年轻人健康结局和患者体验（AYA HOPE）研究，以解决这一差距。我们从监测、流行病学和最终结果癌症登记处招募了年龄在 15 至 39 岁之间被诊断患有生殖细胞、霍奇金和非霍奇金淋巴瘤、急性淋巴细胞白血病和肉瘤的个体，将其纳入美国首个针对癌症青少年和年轻人的医疗保健、身体和心理健康结局的多中心基于人群的研究。对已发表的 17 篇论文的综述表明，对临床试验的认识不足，癌症对经济负担、教育和工作、人际关系和家庭计划以及身心健康的影响巨大。它突出了开展基于人群的纵向研究的可行性，以及在美国内外开展癌症青少年和年轻人研究的重要经验教训。
