Risk stratified survivorship care pathways for early-onset colorectal cancer

摘要：在过去的二十年里，50岁以上成人结直肠癌的发病率(即， 早发性结直肠癌的发病率一直在惊人地稳步上升。尽管出现了这些增长，但生存护理 发展缓慢，仍然缺乏信息，质量不佳。早发性结直肠癌患者有 特别容易受到次优护理，因为这种疾病更多地是在种族和民族中诊断的 少数群体以及处于金融不稳定和医疗保险不足或未参保的人的人生阶段 更常见。因此，迫切需要设计一种符合以下要求的生存护理模式：1)强度 有实际复发风险的监测；和2)提供有需要的护理服务。分层 生存护理路径提供了提供以患者为中心的高质量护理的机会 为个人需求量身定做。然而，这些途径目前还不存在于患有 早发性CRC，部分原因是缺乏基于人群的复发估计，可以指导 监测方法和对这些患者独特的生存护理知识的缺乏 负担和需求。在这项提案中，我们将与佐治亚州、肯塔基州和洛杉矶的三个SEER注册机构合作 洛杉矶县将应用一种新的方法来确定I-III期患者的复发模式 早发性结直肠癌，生成人群水平的复发风险估计，并检查临床和 与复发风险相关的社会人口学因素(目标1)。然后我们将调查一位当代和 不同的基于SEER的早发性结直肠癌患者队列评估患者接受 跨多个领域的监测和自我报告的生存护理需求(例如，身体症状， 财务问题、计划生育)(目标2)。最后，根据目标1和目标2的调查结果，我们将制定一项 具有多学科咨询小组的分层生存护理框架和护理路径(目标3)。我们 将让患者、护理者和临床医生利益相关者参与使用兰德/加州大学洛杉矶分校的共识小组 适当的方法，细化和最终确定分层的生存护理框架和护理路径。 然后，我们将评估利益相关者的可接受性、适当性和可行性。这项研究将 产生急需的基于人群的复发风险、监测强度和 生存护理需求并为这一快速增长的需求生成分层的生存护理路径 癌症幸存者的人口。这些发现有可能有意义地提高 早发性结直肠癌患者的生存护理与分层生存护理的科学性 更广泛地说，为其他癌症提供服务。

Abstract: Over the past two decades, the incidence of colorectal cancer among adults < 50 years of age (i.e., early-onset CRC) has been alarmingly and steadily increasing. Despite these increases, survivorship care has evolved slowly and remains poorly informed and of suboptimal quality. Patients with early-onset CRC are particularly vulnerable to suboptimal care, given that the disease is more often diagnosed in racial and ethnic minorities and at a stage in life when financial instability and being medically underinsured or uninsured are more common. Thus, there is a critical need to design a model of survivorship care that aligns: 1) the intensity of surveillance with actual risk of recurrence; and 2) the provision of care services with need. Stratified survivorship care pathways provide an opportunity to deliver patient-centered, high-quality care that is appropriately tailored to individual needs. However, these pathways currently do not exist for patients with early-onset CRC, which is in part due to the lack of population-based estimates of recurrence that can guide surveillance approaches and the dearth of knowledge regarding these patients’ unique survivorship care burdens and needs. In this proposal, we will partner with three SEER registries in Georgia, Kentucky, and Los Angeles County to apply a new methodology to identify patterns of recurrence among patients with stage I-III early-onset CRC, generate population-level estimates of risk of recurrence, and examine clinical and sociodemographic factors associated with recurrence risk (Aim 1). We will then survey a contemporary and diverse SEER-based cohort of patients diagnosed with early-onset CRC to assess patients’ receipt of surveillance and self-reported survivorship care needs across multiple domains (e.g., physical symptoms, financial issues, family planning) (Aim 2). Finally, informed by findings from Aims 1 and 2, we will develop a stratified survivorship care framework and care pathways with a multi-disciplinary Advisory Panel (Aim 3). We will engage patients, caregivers, and clinician stakeholders in a consensus panel using the RAND/UCLA Appropriateness Method to refine and finalize the stratified survivorship care framework and care pathways. We will then assess the acceptability, appropriateness, and feasibility among the stakeholders. This study will yield much-needed population-based estimates of recurrence risk, surveillance intensity, and survivorship care needs and generate stratified survivorship care pathways for this rapidly growing population of cancer survivors. The findings have the potential to meaningfully improve the quality of survivorship care for patients with early-onset CRC and advance the science of stratified survivorship care delivery for other cancers more broadly.