1Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute.
2Department of Medical Oncology, Netherlands Cancer Institute - Antoni van Leeuwenhoek, Amsterdam, and.
J Natl Compr Canc Netw. 2021 Mar 2;19(3):240-246. doi: 10.6004/jnccn.2020.7696.
Historically, adolescent and young adult (AYA) patients with cancer, diagnosed for the first time at age 15 through 39 years, have often been identified as a "lost tribe" without a medical "home"; neither pediatric nor adult oncology services were able to provide age-appropriate care to this specific group. Internationally, AYA care programs are being established to bridge the gap between the age-defined healthcare worlds and to address the specific needs of AYAs with cancer. However, AYA care programs mostly focus on improving cure rates and addressing survivorship issues, and direct less attention to the unique needs of those living with an uncertain and/or poor cancer prognosis. Additionally, palliative care services are typically poorly equipped to address the age-specific needs of this group. Given that increasingly more AYAs with an uncertain and/or poor cancer prognosis are gaining life years because of novel treatments, and sometimes even face the prospect of long-term disease control, AYA care programs should address the unique palliative care needs of this "new" lost tribe within AYA oncology. This report provides a definition and description of the AYA population living with an uncertain and/or poor cancer prognosis in terms of epidemiologic, clinical, and psychosocial characteristics and challenges, and provides perspectives for future research and care initiatives. It also highlights the need to comprehensively examine the experience of AYAs who are living with uncertain and/or poor cancer prognosis to adjust best care practices for this unique group.
从历史上看，首次被诊断患有癌症的青少年和年轻成年人（AYA）患者，年龄在 15 岁至 39 岁之间，往往被视为一个“失落的部落”，没有医疗“家园”；儿科和肿瘤学服务都无法为这一特定群体提供适龄护理。在国际上，正在建立 AYA 护理计划，以弥合年龄定义的医疗保健世界之间的差距，并解决患有癌症的 AYA 的特定需求。然而，AYA 护理计划主要侧重于提高治愈率和解决生存问题，而对那些患有不确定和/或预后不良癌症的人的独特需求关注较少。此外，姑息治疗服务通常无法满足这一群体的特定年龄需求。鉴于越来越多的预后不确定和/或预后不良的 AYA 患者因新的治疗方法而获得了更多的生命年，有时甚至面临长期疾病控制的前景，AYA 护理计划应该解决 AYA 肿瘤学中这一“新”失落部落的独特姑息治疗需求。本报告根据流行病学、临床和社会心理特征和挑战，对患有不确定和/或预后不良癌症的 AYA 人群进行了定义和描述，并为未来的研究和护理计划提供了视角。它还强调需要全面研究那些患有不确定和/或预后不良癌症的 AYA 的经历，以调整针对这一独特群体的最佳护理实践。
