RRSS #9 - Patterns of Care - Dx 2006 Adolescent and Younng Adult - Fred Hutch

与年轻和老年癌症人群相比，SEER数据表明，15至39岁的青少年和青年（AYA）人群几十年来癌症生存率几乎没有改善。2005年，美国国家癌症研究所与兰斯·阿姆斯特朗基金会合作，成立了一个进展审查小组（PRG），以解决AYA癌症人群的特殊研究和癌症护理需求。PRG确定了与癌症护理提供相关的重要潜在因素，这些因素可能导致许多AYA癌症患者的相对结局较差，包括：患者获得护理，诊断延迟，癌症治疗环境和护理提供者使用的特定治疗实践。 使用SEER提供的数据，最近的进展审查小组（PRG）关于青少年和年轻成人（AYA）癌症的报告确定，AYA的后续行动是一个高度优先事项。虽然大多数年龄组的存活率一直在增加，但AYA的存活率却没有增加。因此，PRG建议应特别重视收集这些诊断为癌症的个体的当前和完整的治疗数据。这些患者太频繁地陷入儿科和成人肿瘤学之间的无人区。对AYA的研究进一步受到限制，因为他们参与的临床试验相对较少，部分原因是诊断医生很少将这些患者推荐给试验。护理的不一致性，加上研究数据不足，阻碍了治疗和监测患有癌症的AYA的指导方针的制定，并且几乎没有工具可以衡量在不同环境中提供的治疗和心理干预的效果。PRG确定，在这一人群中进行研究是一项高度优先的科学工作。 为了解决这些差距，我们已经组建了一个跨NCI和校外团队，计划在2007年10月开始进行一项可行性研究，包括大约500名AYA患者。

Compared to younger and older aged cancer populations, SEER data suggest that the adolescent and young adult (AYA) population between the ages of 15 and 39 years has seen little or no improvement in cancer survival rates for decades. In 2005, the National Cancer Institute partnered with the Lance Armstrong Foundation and developed a Progress Review Group (PRG) to address the special research and cancer care needs of the AYA cancer population. The PRG identified important potential factors related to cancer care delivery that may contribute to the poorer relative outcome for many AYA cancer patients including: the patient access to care, delays in diagnosis, the cancer treatment setting and specific treatment practices used by care providers. Using the data provided by SEER the recent Progress Review Group (PRG) Report on Cancer in Adolescent and Young Adults (AYA) determined that follow-up of AYA was a high priority. While survival has been increasing for most age groups, it has not for AYA. Therefore, the PRG suggested a special emphasis should be placed on collection of current and complete treatment data for these individuals diagnosed with cancer. These patients too frequently fall into a ¿no man's land¿ between pediatric and adult oncology. Research on AYAs has been further constrained by their exceedingly low participation in the relatively few clinical trials available to them, in part because diagnosing physicians seldom refer these patients to trials. Inconsistency in care, coupled with insufficient research data, has prevented the development of guidelines for treating and monitoring AYAs with cancer, and few tools exist to measure the efficacy of treatment and psychosocial interventions delivered in diverse settings. The PRG determined that research in this population was a high scientific priority. To address these gaps, we have assembled a trans-NCI and extramural team to plan a feasibility study to include approximately 500 AYA patients beginning in October 2007.