? 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." |