A Needs and Preference Assessment for a Colorectal Cancer Survivorship Care Plan

描述(由申请人提供)：许多癌症幸存者没有得到适当的治疗后护理。1-8为了解决治疗后(生存)护理方面的不足，医学研究所(IOM)建议制定幸存者护理计划，在本提案中称为“护理计划”。9每个护理计划包含关于幸存者的诊断和治疗的个性化信息、建议的持续护理以及为癌症幸存者提供的资源清单。这些书面计划由癌症专家提供给每一位癌症幸存者，并将与他们的初级保健医生分享。使用护理计划的两个目标是1)教育幸存者关于癌症生存问题和2)帮助初级保健医生为癌症幸存者提供高质量的护理。护理计划具有极好的表面有效性，但尚未根据其满足护理计划创建者和传播者(癌症专家)和接受护理计划者(癌症幸存者和初级保健医生)的需求和偏好的能力进行评估。为了提高癌症幸存者接受的护理质量，护理计划必须包含幸存者寻找适当的治疗后护理所需的关键信息，并将帮助初级保健医生为癌症幸存者提供高质量的护理。此外，护理计划必须便于实施。为了最大限度地利用和受益护理计划，需要围绕幸存者、癌症专家和初级保健医生的需求和偏好进行设计。这些需求和偏好尚未得到评估。这项拟议的研究旨在通过调查癌症幸存者、初级保健医生和癌症专家来回答这些重要的问题，而不是促进护理计划。我们专注于结直肠癌(CRC)幸存者的护理，他们在美国约有100万人9，他们在癌症后护理方面存在明显的缺陷，包括新CRC的检测率低，其他癌症的检测率低，必要医疗护理的使用率低，以及心理痛苦的比率高。1-8，10-12我们的目标是对幸存者和医生进行调查，并在描述性研究中报告他们的需求和偏好。此外，我们的目标是系统地审查已经在NCI指定的癌症中心使用的CRC和乳腺癌的护理计划，以便描述现有护理计划的覆盖范围和内容。我们将使用国际移民组织关于护理计划的建议作为评估护理计划的标准。9在未来的一项研究中，调查结果和对现有护理计划的审查将指导制定新的护理计划，以满足幸存者和医生的需求。我们将提交一份NIH R01拨款提案，以测试新的护理计划如何有效地改善对CRC幸存者的护理质量。 公共卫生相关性：虽然生存护理计划越来越多地被使用并传播给癌症幸存者，但这项研究填补了一个重要的空白，即了解护理计划需要解决的问题，以及如何最好地将护理计划定位于癌症幸存者和护理他们的医生。这项研究的结果将有助于制定一项针对这些人的需求和偏好的护理计划，其在促进高质量生存护理方面的有效性将在未来的随机临床试验中进行评估。

DESCRIPTION (provided by applicant): Many cancer survivors do not receive adequate post-treatment care.1-8 To address deficiencies in post- treatment (survivorship) care, the Institute of Medicine (IOM) proposed the development of survivorship care plans, which will be called "care plans" in this proposal.9 Each care plan contains personalized information about the survivor's diagnosis and treatment, recommended ongoing care, and a list of resources for cancer survivors. These written plans are provided by cancer specialists to each cancer survivor and are to be shared with their primary care physician. The two goals of using care plans are to 1) educate survivors about cancer survivorship issues and 2) help primary care physicians deliver high quality care for cancer survivors. Care plans have excellent face validity, but they have not been evaluated in terms of their ability to address the needs and preferences of those who create and disseminate care plans (cancer specialists) and those who receive care plans (cancer survivors and primary care physicians). In order to improve the quality of care that cancer survivors receive, care plans must contain the critical information that survivors need to seek out appropriate post-treatment care and that will help primary care physicians provide high quality care to cancer survivors. Further, care plans must be convenient to implement. To maximize the use and benefits of care plans, they need to be designed around the needs and preferences of survivors, cancer specialists, and primary care physicians. These needs and preferences have not yet been evaluated. The proposed study aims to step back from promoting care plans and answer these important questions by surveying cancer survivors, primary care physicians, and cancer specialists. We focus on the care of colorectal cancer (CRC) survivors, who number approximately 1 million in the U.S.9 and have well-documented deficiencies in post-cancer care, including low rates of testing for new CRCs, low rates of testing for other cancers, low rates of use of necessary medical care, and high rates of psychological distress.1-8, 10-12 We aim to develop, pilot-test, and administer surveys to survivors and physicians and report their needs and preferences in a descriptive study. Further, we aim to systematically review care plans for both CRC and breast cancer that are already in use at NCI-designated cancer centers, in order to describe the reach and content of existing care plans. We will use the IOM's proposal for care plans as criteria to evaluate care plans.9 In a future study, the findings from the surveys and the review of existing care plans will guide the development of a new care plan that responds to the needs of survivors and physicians. We will submit an NIH R01 grant proposal to test how effectively the new care plan improves the quality of care for CRC survivors. PUBLIC HEALTH RELEVANCE: Although survivorship care plans are increasingly being used and disseminated to cancer survivors, this study fills in an important gap in understanding the problems care plans need to address and how care plans can best be targeted to cancer survivors and the physicians who care for them. Findings from this study will contribute to the development of a care plan that responds to the needs and preferences of these individuals, and its effectiveness in promoting high quality survivorship care will be evaluated in a future randomized clinical trial.