Adding patient and provider viewpoints to rectal cancer practice variation data

将患者和提供者的观点添加到直肠癌实践变异数据中

• 批准号: 8949146
• 负责人: MARY E. CHARLTON
• 金额: $ 14.19万
• 依托单位: UNIVERSITY OF IOWA
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-09-01 至 2020-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8949146
• 关键词: Affect; Automobile Driving; Belief; Biological Preservation; Cancer Patient; Caring; Characteristics; Clinical; Colon Carcinoma; Colonoscopy; Colorectal Cancer; Communication; Complex; Comprehensive Cancer Center; Data; Data Collection; Data Linkages; Data Set; Databases; Decision Making; Development; Development Plans; Diagnosis; Disease; Educational process of instructing; Educational workshop; Elderly; Evaluation; Excision; Faculty; Focus Groups; Funding; Future; Genitourinary system; Goals; Group Interviews; Guidelines; Health; Health Policy; Hospitals; Incidence; Individual; Intervention; Iowa; Knowledge; Lead; Leadership; Learning; Link; Malignant Neoplasms; Measurement; Medical Records; Mentors; Mentorship; Methods; Minority; Morbidity - disease rate; NCI-Designated Cancer Center; Neoadjuvant Therapy; Operative Surgical Procedures; Organ; Outcome; Pathogenesis; Pathway interactions; Patients; Pattern; Pelvis; Perception; Physicians; Policy Research; Population; Population Research; Process; Protocols documentation; Provider; Psychometrics; Public Health; Published Comment; Qualitative Methods; Quality of life; Recommendation; Rectal Cancer; Registries; Research; Research Personnel; Research Project Grants; Risk Factors; Rural; Sampling; Sphincter; Staging; Surgeon; Surveys; Survival Rate; System; Testing; Time; TimeLine; Training; Treatment outcome; Universities; Variant; Visit; World Health Organization; anticancer research; base; burden of illness; cancer therapy; career; career development; chemoradiation; college; data registry; design; expectation; experience; health care delivery; improved; innovation; instrument; malignant breast neoplasm; medical specialties; meetings; member; neoplasm registry; patient oriented; professor; response; screening; skills; sound; statistics; tumor; ward

 DESCRIPTION (provided by applicant): My long-term career goal is to develop a research agenda around identifying factors that contribute to suboptimal outcomes for cancer patients by developing the ability to combine administrative data with individual-level stakeholder qualitative and survey data. In order to achieve this objective, I need training and experience with qualitative methods and the design and testing of survey instruments. My specific short- term objectives are to (1) acquire the skills to execute patient-centered research through qualitative methods and the design and testing of survey instruments to explain phenomena discovered through analyses of SEER or administrative data, (2) gain experience linking Iowa SEER data with complementary data sets, and (3) transition to independence through the development of an investigator-initiated (R01) application and leadership skills and relationships necessary to lead the Iowa SEER Cancer Registry. I will achieve my short- term objectives during the proposed 5-year timeline through coursework, workshops, and scientific meetings, and through apprentice-style training to learn from my mentors' research and project leadership activities. My mentorship team includes three highly experienced professors in the University of Iowa College of Public Health who have complementary expertise that supports my career development plan. Dr. Lynch directs the Iowa SEER Cancer Registry and has extensive experience with linkage studies and recruitment of subjects through the Registry. Dr. Chrischilles directs the Population Research Core in the NCI-designated Holden Comprehensive Cancer Center and has experience in developing survey instruments for cancer patients. Dr. Ward directs the Center for Health Policy and Research and leads several projects involving qualitative and mixed-methods approaches to studying rural healthcare delivery. She also teaches a course on primary data collection and mixed-methods. My statistical contributor, Dr. Mengeling, is a psychometrician with expertise in survey development and evaluation of measurement constructs of survey instruments. My research plan related to rectal cancer treatment will provide opportunities to develop expertise in mixed- methods and data linkages, and will also provide pilot data and survey instruments for use in future R01 protocols. Analyses of several large databases have shown that patients who receive treatment from surgeons who perform large numbers of rectal cancer resections experience better rates of survival and sphincter preservation than patients who do not, but only a small proportion of patients receive treatment from these highly-experienced surgeons. My research objective is to identify factors that drive patient and referring provider decisions about where to seek and recommend care for rectal cancer, respectively, and link them to objective data on patient, tumor and provider characteristics. This research is innovative because communication and decision-making related to referrals is not well understood, and results from this project will provide a multi-stakeholder assessment of perceptions of and expectations for rectal cancer treatment. Results can be used to inform interventions to enhance communication and decision making, which could ultimately improve patient outcomes. I plan to accomplish my objective by pursuing the following 3 aims: Aim 1: Identify the common pathways for referrals between time of diagnosis (i.e., colonoscopy) and first visit with the surgeon who ultimately performs the rectal cancer-directed surgery. Determine patient, provider and pathway characteristics associated with receipt of surgery from high-volume providers to inform the sampling approach to be used in Aim 2. Aim 2: Evaluate the associations between patient perceptions and decisions on where to seek rectal cancer treatment, and between referring-provider considerations and decisions on where to recommend care. Mirroring the process employed by the World Health Organization Quality of Life (WHOQOL) Group (1995), survey instruments will be developed in the following stages: Stage 1: Concept clarification using a panel of experts to define domains. Stage 2: Qualitative pilot using focus groups/interviews with patients and providers to define sub-domains and draft items. Stage 3: Pilot test instruments and assess psychometric statistics. Aim 3: Link survey responses and medical record data with Iowa SEER Registry data, Iowa hospital discharge data and physician specialty data to identify more completely the factors and outcomes associated with receiving care from specialized, high volume providers. Design an investigator-initiated proposal (R01) to administer instruments to a large, nationally representative population of 1) referring providers, and 2) rectal cancer patients, who can then be followed to assess long-term outcomes associated with decisions on where to receive treatment. Populations across regions can be compared to inform interventions. Expected outcomes include preliminary data and two instruments for use in the R01 project. One instrument will assess patient decision making & outcomes, and the other will assess provider decision making. Results of this project and the planned R01 are expected to have a positive impact on rectal cancer outcomes because they will identify patient, provider and system-level factors that influence treatment decisions, referrl patterns and receipt of guideline recommended care, which can then be targeted for intervention.

 描述（由申请人提供）：我的长期职业目标是通过开发将管理数据与个人层面的利益相关者定性相结合的能力，围绕识别导致癌症患者结果不佳的因素制定一个研究议程 和调查数据。为了实现这一目标，我需要定性方法以及调查工具的设计和测试方面的培训和经验。我的具体短期目标是 (1) 获得通过定性方法以及设计和测试调查工具来执行以患者为中心的研究的技能，以解释通过分析 SEER 或管理数据发现的现象，(2) 获得将爱荷华州 SEER 数据与补充数据集联系起来的经验，以及 (3) 通过开发研究者发起的 (R01) 应用程序以及领导爱荷华州所需的领导技能和关系，过渡到独立性 SEER 癌症登记处。我将在拟议的 5 年时间内通过课程作业、研讨会和科学会议以及通过学徒式培训向导师的研究和项目领导活动学习来实现我的短期目标。我的导师团队包括爱荷华大学公共卫生学院的三位经验丰富的教授，他们拥有互补的专业知识，可以支持我的职业发展计划。 Lynch 博士负责爱荷华州 SEER 癌症登记处的工作，在关联研究和通过登记处招募受试者方面拥有丰富的经验。 Chrischiles 博士领导 NCI 指定的霍顿综合癌症中心的人口研究核心，并拥有为癌症患者开发调查工具的经验。沃德博士领导卫生政策与研究中心，并领导多个项目，涉及定性和混合方法来研究农村医疗保健服务。她还教授有关初级数据收集和混合方法的课程。我的统计撰稿人门格林博士是一位心理测量学家，在调查开发和调查工具的测量结构评估方面拥有专业知识。我与直肠癌治疗相关的研究计划将为发展混合方法和数据链接方面的专业知识提供机会，还将提供用于未来 R01 方案的试点数据和调查工具。对几个大型数据库的分析表明，接受进行大量直肠癌切除的外科医生治疗的患者比未进行大量直肠癌切除的患者获得更好的生存率和括约肌保留率，但只有一小部分患者接受这些经验丰富的外科医生的治疗。我的研究目标是确定推动患者和转诊提供者分别决定去哪里寻求和推荐直肠癌护理的因素，并将它们与患者、肿瘤和提供者特征的客观数据联系起来。这项研究具有创新性，因为与转诊相关的沟通和决策尚未得到很好的理解，该项目的结果将为多方利益相关者对直肠癌治疗的看法和期望进行评估。结果可用于为干预措施提供信息，以加强沟通和决策，从而最终改善患者的治疗结果。我计划通过实现以下 3 个目标来实现我的目标： 目标 1：确定从诊断（即结肠镜检查）到最终进行直肠癌手术的外科医生首次就诊之间转诊的常见途径。确定与接受大容量提供者的手术相关的患者、提供者和途径特征，以告知目标 2 中使用的抽样方法。目标 2：评估患者的看法和关于在哪里寻求直肠癌治疗的决定之间的关联，以及转诊提供者的考虑因素和关于在哪里推荐护理的决定之间的关联。参照世界卫生组织生活质量 (WHOQOL) 小组 (1995) 采用的流程，调查工具将分以下阶段开发： 第 1 阶段：使用专家小组定义领域来澄清概念。第二阶段：定性试点，使用焦点小组/采访患者和提供者来定义子领域和草案项目。第三阶段：试点测试仪器并评估心理统计数据。目标 3：将调查回复和医疗记录数据与爱荷华州 SEER 登记数据、爱荷华州出院数据和医生专业数据联系起来，以更全面地确定与接受专业大容量提供者护理相关的因素和结果。设计一项由研究者发起的提案 (R01)，向大量具有全国代表性的人群使用仪器，其中包括 1) 转诊提供者和 2) 直肠癌患者，然后可以对这些患者进行跟踪评估与决定在何处接受治疗相关的长期结果。可以对不同地区的人口进行比较，以便为干预措施提供信息。预期成果包括 R01 项目中使用的初步数据和两种仪器。一种工具将评估患者的决策和结果，另一种工具将评估提供者的决策。该项目的结果和计划的 R01 预计将对直肠癌结果产生积极影响，因为它们将确定影响治疗决策、转诊模式和接受指南推荐护理的患者、提供者和系统层面的因素，然后可以有针对性地进行干预。