National trends in end of life care for adolescent and young adult cancer patients

 描述(由申请人提供)：据估计，每年有69,000名15-39岁的青少年和年轻人(Aya)被诊断为偶发癌症。这个年龄段的癌症发病率很低。癌症的五年存活率约为80%，导致五分之一的年轻人口过早死亡。由于Aya保健处于儿童肿瘤学和成人肿瘤学之间的“无人区”，临床试验参与率低，以及缺乏足够的样本大小进行观察性研究的数据，对Aya人群的卫生服务研究研究一直很少。到目前为止，大多数关于临终关怀的相关卫生服务研究都集中在医疗保险人群中。临终前的决定尤其困难，因为我们的社会利他主义要尽我们所能将年轻人从致命的癌症中拯救出来。为了开始了解医疗保健利用在这一人群中的重要性，我们有机会在UnitedHealth Group提供的最大可用全国索赔数据中评估257,400名Aya人中估计有10,725人死亡的医疗保健利用情况。使用观察性队列研究，我们的目标是了解生命末期护理的现状，定义 在2003-2015年间，使用这一宝贵资源，在过去30天和365天内对确诊为癌症并随后死于癌症的Aya人口的医疗保健利用率进行了评估。为了实现这些目标，我们将：1)通过评估2003至2015年的时间趋势，描述和比较Aya人群在生命的最后30天和365天内接受医疗、手术和药物干预的情况；以及2)通过评估美国的地理变异，描述和比较Aya人口在生命的最后30天和365天内接受医疗、手术和药物干预的情况。我们将使用多因素相对风险回归模型估计死亡30天内接受化疗和住院的风险作为主要分析。将对次要结果进行类似的统计分析。我们的建议将满足临终关怀卫生服务研究中的一项重大而重要的需求。我们建议评估30天和365天的结果，以更充分地了解导致癌症相关死亡的肿瘤学护理连续体，并识别时间趋势或地理区域。有了这项研究的结果，我们可以通过提供缺失的一环，为未来在阿雅族人口中进行的生命终结研究奠定基础：阿亚族人的生命末期护理目前正在发生什么？有了这些信息，未来的研究可以开发关于癌症治疗利用的相关比较有效性研究问题，开发在晚期Aya人群中纳入姑息治疗的干预措施，并使患者的偏好与癌症治疗保持一致。使用基于国家索赔的数据，我们将拥有最大的阿亚族人口死亡样本，以研究13年期间的国家趋势。我们有机会为年轻癌症患者的肿瘤学护理领域做出至关重要的贡献。我们有机会克服在Aya人群中对临终关怀的理解上的重大差距。

 DESCRIPTION (provided by applicant): An estimated 69,000 adolescents and young adults (AYA) aged 15-39 years are diagnosed with incident cancer each year. The incidence of cancer within this age group is rare. Five-year survival from cancer is around 80%, resulting in untimely deaths for one-fifth of a young population. Health services research in the AYA population has been poorly studied due to AYA care falling in "no man's land" between pediatric and adult oncology, low participation in clinical trials, and lack of data of sufficient sample size for observational studies. To date, most of the relevant health services research on end of life care has focused in the Medicare population. End of life decisions are particularly difficult because our societal altruism to do what we can to save a young person from fatal cancer. To begin to understand what health care utilization is important in this population, we have the opportunity to evaluate the healthcare utilization an estimated 10,725 deaths among 257,400 AYA individuals in the largest available national claims data from UnitedHealth Group. Using an observational cohort study, our goal is to understand to current state of end of life care, defined as healthcare utilization within the last 30 and 365 days of AYA population with a cancer diagnosis and subsequent death due to cancer in 2003-2015, using this valuable resource. To address these goals we will: 1) Describe and compare the receipt of medical, surgical, and pharmacologic interventions in AYA population within the last 30 days and 365 days of life by evaluating temporal trends from 2003 to 2015; and 2) Describe and compare the receipt of medical, surgical and pharmacologic interventions in AYA population within the last 30 days and 365 days of life by evaluating U.S. geographic variation. We will use multivariate relative risk regression models to estimate risks of receipt of chemotherapy and hospitalization within 30 days of death as the primary analysis. Similar statistical analysis will be completed for secondary outcomes. Our proposal will address a significant and important need in health services research for end of life care. We propose to evaluate both 30 day and 365 day outcomes to more fully understand the oncology care continuum leading to cancer-related death and recognize temporal trend or geographic region. With the results from this study, we can lay the ground work for future end of life research in AYA population by providing the missing link "What is currently happening in end of life care in AYA populations?" With this information, future studies can develop relevant comparative effectiveness research questions on utilization of cancer treatment, develop interventions in the incorporation of palliative care in late stage AYA populations, and align patient preferences with cancer care. Using national claims-based data, we will have the largest sample of deaths in AYA population to study national trends over a 13 year period. We have the opportunity to make a critically important contribution to the field of oncology care of young cancer patients. We have the opportunity to overcome a significant gap in understanding end of life care within the AYA population.