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: 9754795
• 负责人: MARY E. CHARLTON
• 金额: $ 14.2万
• 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/9754795
• 关键词: Affect; Automobile Driving; Belief; 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; Diagnostic radiologic examination; Disease; 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; Patient-Focused Outcomes; 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; Sampling; Sphincter; Staging; Surgeon; Surveys; Survival Rate; System; Testing; Time; TimeLine; Training; Treatment outcome; Universities; Variant; Visit; World Health Organization; anticancer research; apprenticeship; 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; patient-clinician communication; preservation; professor; public health relevance; recruit; response; rural healthcare; 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（由适用提供）：我的长期职业目标是通过开发将行政数据与个人级别利益相关者定性相结合的能力来识别导致癌症患者次优结果的因素开发研究Agerda 和调查数据。为了实现这一目标，我需要使用定性方法以及调查工具的设计和测试的培训和经验。我的具体短期目标是（1）获得通过定性方法以及调查工具的设计和测试来执行以患者为中心的研究的技能，以解释通过对SEER或行政数据的分析发现的现象，（2）获得与完整数据集的IOWA SEER数据联系的经验，以及（3）通过对领导者的实施和研究人员的发展（3）实施INDEMISTIC INDEMSTION和RENAGERTION INSWIRE INDEMISTIC INSWIRE INDEMISTIND INSWICER INTIFES ONTIFES ONTIFES WONSICATION INWOWINE SEWISWINEW（R0）（R0）（3）注册表。在拟议的5年时间表中，我将通过课程，讲习班和科学会议实现自己的短期目标，并通过学徒风格的培训，从我的导师的研究和项目领导力活动中学习。我的精神训练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，他们具有支持我职业发展计划的互补专业知识。林奇博士指导爱荷华州的癌症注册表，并在通过注册表中招募主题方面具有丰富的经验。 Chrischilles博士指导NCI指定的Holden综合癌症中心的人口研究核心，并具有开发癌症患者调查工具的经验。沃德博士指导卫生政策与研究中心，并领导几个涉及定性和混合方法的项目来研究粗暴的医疗保健服务。她还教授有关主要数据收集和混合方法的课程。我的统计撰稿人Mengeling博士是一名心理学家，在调查开发和评估调查工具的测量结构方面具有专业知识。我与直肠癌治疗相关的研究计划将为建立混合方法和数据链接方面的专业知识提供机会，还将提供试点数据和调查工具，以在将来的R01协议中使用。对几个大数据库的分析表明，接受大量直肠癌切除术的外科医生接受治疗的患者的生存率和括约肌保留率比没有的患者更好，但只有一小部分患者接受了这些高度经验丰富的外科医生的治疗。我的研究目的是确定分别推动患者和推荐提供者决定在哪里寻求和推荐直肠癌的因素，并将其与患者，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，因为与推荐相关的沟通和决策尚不清楚，该项目的结果将提供对直肠癌治疗的看法和期望的多方利益相关者评估。结果可用于告知干预措施以增强沟通和决策，这最终可以改善患者的结果。我计划通过追求以下3个目标来实现我的目标：目标1：确定诊断时间（即结肠镜检查）之间转介的共同途径，并首次与最终进行直肠癌指导手术的外科医生进行。确定患者，提供者和途径特征与高量提供者接受手术有关的手术，以告知AIM 2中要使用的采样方法。目标2：评估患者的看法与在哪里寻求直肠癌治疗的决定之间的关联，以及在何处推荐提供者的注意事项和建议的建议。反映世界卫生组织生活质量（WHOQOL）Group（1995）进行的过程，将在以下阶段开发调查工具：阶段1：使用专家小组定义领域的概念澄清。阶段2：定性飞行员使用焦点小组/与患者和提供者进行焦点小组/访谈来定义子域和草稿。第3阶段：试点测试工具和评估心理测量学统计。 AIM 3：与爱荷华州SEER注册表数据，爱荷华州医院出院数据和医师专业数据的链接调查响应和病历数据，以更完整地确定与从专业的高批量提供者接受护理相关的因素和结果。设计一个研究人员发起的建议（R01），以对大量的全国代表性人群进行管理，1）转诊提供者，以及2）直肠癌患者，然后可以遵循他们的长期结果，以评估与何处接受治疗有关的决策。可以比较各个地区的人口，以告知干预措施。预期的结果包括初步数据和在R01项目中使用的两种仪器。一种工具将评估患者的决策和结果，另一个工具将评估提供者的决策。该项目的结果和计划中的R01预计将对直肠癌的结果产生积极影响，因为它们将确定影响治疗决策，转诊模式和收到指南建议的护理的患者，提供者和系统级别的因素，然后将其针对干预。

项目成果

Stage II/III Rectal Cancer Post-Treatment Surveillance Patterns of Care: A SEER- Medicare Study.

II/III 期直肠癌治疗后监测护理模式：SEER-医疗保险研究。

• DOI: 10.19080/argh.2021.17.555972
• 发表时间: 2021
• 期刊: Advanced research in gastroenterology & hepatology
• 作者: Chioreso,Catherine;Schroeder,MaryC;Rupp,IrenaGribovskaja;Ammann,Eric;Carter,KnuteD;Lynch,CharlesF;Chrischilles,ElizabethA;Charlton,MaryE
• 通讯作者: Charlton,MaryE