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Diagnosis Experience Survey

Uterine cancer is the most common type of gynecologic cancer. Uterine cancer includes both endometrial cancer (i.e., cancer that starts in the inner lining of the uterus) and uterine sarcoma (i.e., cancer that starts in the muscle layer of the uterus). Early diagnosis is important because it can improve treatment options and the effectiveness of treatment.

However, some patients are diagnosed later than other patients. For example, Black patients are less likely than White patients to be diagnosed at an early stage. Because there have been little data on patients’ experience in their diagnostic pathway for uterine cancer, we have limited knowledge about what factors hinder early diagnosis and why there is disparity in early diagnosis. For this reason, we are conducting a research study to systematically examine this issue.

As part of this research effort, we are surveying patients who were recently diagnosed with uterine cancer to learn from their experience. This survey is called the Diagnosis Experience Survey. The survey will ask questions about patients’ demographics (such as race, ethnicity, education, and type of health insurance), symptoms (such as abnormal vaginal bleeding), and experience with health care. For example, what factors affected their decision to see a doctor and what diagnostic test(s) they received.

By understanding current patients’ diagnosis experiences, we hope to improve care for future patients.

This study is being conducted by researchers at Yale University and Columbia University, in collaboration with the New York State Cancer Registry and Georgia Cancer Registry. The study is funded by the National Institute on Minority Health and Health Disparities at the National Institutes of Health.

Research Team

This study is a collaborative effort. Our research team includes investigators at Yale University, Columbia University, New York State Cancer Registry, and Georgia Cancer Registry:

Team Members

  • Assistant Professor of Obstetrics, Gynecology & Reproductive Sciences; Director, Gynecologic Oncology at Waterford; Assistant Program Director, Minimally Invasive Gynecological Surgery Program; Associate Director, Center for Precision Diagnosis of Trophoblastic Disease

    Dr. Clark holds the rank of assistant professor of Obstetrics and Gynecology in the Division of Gynecologic Oncology at Yale University School of Medicine. After finishing residency at Yale New Haven Health, he completed his fellowship training at the internationally renowned Princess Margaret Cancer Center at the University of Toronto where he gained clinical and surgical expertise in all aspects of gynecologic cancer care. He also engaged in a rigorous research program focusing on furthering our understanding of the role of surgery in high-risk ovarian cancer. During his fellowship, he completed a Master's of Public Health and continues to actively research cervical cancer prevention at a population level using healthcare administrative databases. He has received numerous National and International awards for his research, teaching and surgical skills including the Society of Gynecologic Oncology of Canada (GOC) Research Award, Award of Excellence in Minimally Invasive Gynecology (AAGL) and Yale School of Medicine Teaching Award.
  • Associate Professor Adjunct of Obstetrics, Gynecology & Reproductive Sciences

    Dr. Xiao Xu is an Associate Professor in the Department of Obstetrics, Gynecology and Reproductive Sciences at Yale School of Medicine, and a faculty member of Yale Cancer Center and Yale Cancer Outcomes, Public Policy and Effectiveness Research Center (COPPER). As a health economist and health services researcher, her work seeks to promote the delivery of high-quality and high-value care. Her research focuses on examining and identifying factors that influence the quality, outcomes, and value of care, with a focus on women's health care. Her recent studies examined hospital and geographic variation in care utilization, costs, and patient outcomes; comparative effectiveness and cost effectiveness of alternative treatment strategies; and gender and racial/ethnic disparities in health and health care. Dr. Xu is also actively involved in the teaching of medical students, clinical residents/fellows, and postgraduate/postdoctoral fellows. She mentors trainees on research design and methodology, and lectures on methods of data collection, data analysis, and cost effectiveness evaluation. Dr. Xu has served as a principal investigator or co-investigator on multiple research grants funded by the National Institutes of Health (NIH), Agency for Healthcare Research and Quality (AHRQ), and various research foundations. She received honorable mention for the Aetna Susan B. Anthony Award for excellence in research on older women and public health from the American Public Health Association (Gerontological Health Section) in 2005, the Frank J. McDevitt Excellence in Research Award in Policy Research from the Blue Cross Blue Shield of Michigan Foundation in 2008 and 2011, and the Carol Weisman & Gary Chase Gender-Based Research Award from the AcademyHealth in 2017. Dr. Xu is a member of the American College of Obstetricians and Gynecologists, AcademyHealth, the International Health Economics Association, and the Gerontological Society of America.
  • Dr. Wright is the Sol Goldman Associate Professor of Obstetrics and Gynecology and the Division Chief of Gynecologic Oncology at Columbia University. He is a national expert in the treatment of gynecologic cancers and gynecologic surgery, as well as a leading expert in health services research. Dr. Wright’s research focuses on improving the quality of care for women undergoing gynecologic surgery and women with gynecologic cancer. He has led a number of clinical trials and numerous studies examining quality of care and disparities in access/outcomes for gynecologic cancer.
  • Dr. Ward is the Director of the Georgia Center for Cancer Statistics and an Assistant Professor of Epidemiology at Rollins School of Public Health of Emory University. He is also the Principal Investigator of the National Cancer Institute’s Georgia Surveillance, Epidemiology and End Results (SEER) Registry. Dr. Ward has extensive experience with cancer surveillance, registration and control. He collaborates with researchers across the nation to analyze registry datasets and utilize population-based Georgia Cancer Registry as a linkage source or sampling frame for countless research studies.
  • Dr. Kuliszewski is a Research Scientist in the Bureau of Cancer Epidemiology and the New York State Cancer Registry at the New York State Department of Health. She is also a Research Associate Professor of Epidemiology at the University at Albany School of Public Health. Dr. Kuliszewski has over 20 years of experience working in cancer research and evaluation, including cancer clinical trials, epidemiologic analyses of cancer, and cancer screening programs. Her research interests include cancer epidemiology and prevention, modifiable risk factors for cancer, cancer disparities, and cancer outcomes.

Frequently Asked Questions

Why Are We Conducting This Study?
By learning from the experience of patients who were recently diagnosed with uterine cancer, we hope to understand:
  • What factors affect early detection of uterine cancer, and
  • Why some women with uterine cancer are less likely than other women to be diagnosed at an early stage.
What Does This Study Involve?
Participants in this study will complete a survey about their diagnosis experience.
  • It is a self-administered survey that takes approximately 15 minutes.
  • Participants may choose to complete the survey on paper or online.
  • All participants’ information will be kept confidential.
  • Each participant will be paid $20 in appreciation of their time.
Who Is Conducting This Study?
This research study is being conducted by researchers at Yale University, Columbia University, New York State Cancer Registry, and Georgia Cancer Registry. Main investigators of this study include:
  • Mitchell Clark, MD, MPH; Assistant Professor, Yale University
  • Xiao Xu, PhD; Associate Professor Adjunct, Yale University
  • Jason Wright, MD; Sol Goldman Associate Professor, Columbia University
  • Kevin Ward, PhD; Director, Georgia Center for Cancer Statistics / Assistant Professor, Emory University
  • Maggie Gates Kuliszewski, ScD; Research Scientist, New York State Cancer Registry / Research Associate Professor, University at Albany
Who Is Funding This Study?
This study is funded by a research grant from the National Institute on Minority Health and Health Disparities at the National Institutes of Health.
How Are Women Selected for Participation?
We are recruiting uterine cancer patients from two states (New York State and Georgia). Every cancer diagnosed in New York State and Georgia is required by law to be reported and is entered into statewide registries. These registries are designed to track the cancer burden among residents in their states and to support studies about cancer to improve public health. We select patients from the New York State Cancer Registry and Georgia Cancer Registry and invite them to participate in this study. Patients’ names and contact information are obtained from these two cancer registries.
How Will We Use the Information Collected from the Survey?
We will analyze information collected from the survey, along with additional data from the New York State and Georgia cancer registries, to understand what factors affect early detection of uterine cancer and possible reasons for disparity in early diagnosis. We hope this knowledge can help improve the diagnosis process for future patients.
How Will We Keep Participants’ Information Safe and Private?
All information collected from this study will be kept confidential. Participant name does not appear on the survey. Survey responses will be stored on password protected computers and in locked file cabinets. When we publish the result of the research or talk about it in conferences, we will never use participants’ names.