Profiles in Cancer Research
Dr. Robin Yabroff
Health Services and Economics Branch
NCI Division of Cancer Control and Population Sciences
Dr. Robin Yabroff’s wire earrings sway as she talks enthusiastically about her favorite areas of research: projections of cancer trends into the future, patient-time costs, and comparing different methodologies. The draft of a survey is spread across her desk with edits and comments penciled neatly in the margins. This particular survey is designed to gather data about people who have or have had cancer and includes questions about their insurance coverage and employment status. Dr. Yabroff hopes the survey will help fill a gap in cancer patient data, particularly for those under the age of 65.
Dr. Yabroff is a recognized leader in the field of health services research. As an epidemiologist in the Health Services and Economics Branch of NCI’s Division of Cancer Control and Population Sciences, she designs studies, develops surveys, and dissects data sets to understand how patients interact with the health care system, and how such interaction affects the quality of care they receive. She does this in collaboration with other researchers from different disciplines, and says that her daily interaction with colleagues is a critical aspect of the research.
“Working with the expertise of clinicians, statisticians, economists, and behavioral scientists improves the quality and potential impact of our research,” she said, “and helps us to develop research resources for other scientists to use.”
Looking at the Big Picture
Like millions around the world, Dr. Yabroff has been touched by cancer in a personal way. In the early 1990s, her grandmother was diagnosed with breast cancer. A few years later, while working as a research associate at Georgetown University Medical Center’s Clinical Economics Research Unit, Dr. Yabroff had a choice: work on an infant mortality study or help craft a breast cancer study that examined how elderly women make decisions about their treatment.
Her grandmother’s recent struggle with treatment decisions, Dr. Yabroff said, made it “very natural” to take on the breast cancer study.
In the late 1990s, the disease became personal again when her mother was diagnosed with ovarian cancer that progressed rapidly. And in 2005, Dr. Yabroff was herself diagnosed with breast cancer. These events molded her research as she was forced to sort through referrals and second opinions, treatment decisions, and questions about which expenses would be covered by her insurance plan.
Dr. Yabroff didn’t have clear career goals when she graduated from Indiana University with degrees in biology and psychology in 1987. She started out working in a research lab in an effort to find her niche. Later, she developed a curiosity about emerging biotech companies and the stock market, which led to an M.B.A and ultimately the study of health economics.
While at Georgetown’s Clinical Economics Research Unit, she worked as a research associate on several cancer cost-effectiveness studies. This research environment provided the perfect blend of clinical epidemiology and health economics, she said, and prompted her to pursue a Ph.D. in epidemiology at the Johns Hopkins Bloomberg School of Public Health.
It was during this time that her mother was diagnosed with ovarian cancer. The effect on the family was significant. Her mother had to stop working and her father took a leave of absence and subsequently retired. Dr. Yabroff, too, had to take time off from both work and graduate school, and her sister also took a leave of absence. The whole family had to adapt, she said.
Dr. Yabroff remembered accompanying her mother to the hospital for 24-hour chemotherapy treatments and helping her deal with insurance hurdles and referrals. “It was like a full-time job helping her navigate her care,” she recalled.
Luckily, her mother had good health insurance coverage. “Even in the best-case scenario, cancer treatment is really tough to manage,” she said. “So, what happens when patients and their families don’t have some of those advantages?”
The experience led her to pursue research in end-of-life care, as well as topics such as the impact of cancer on employment and productivity (that of patients and caregivers) and disparities in health care delivery. While at Georgetown University Medical Center’s Lombardi Cancer Center, she served as co-investigator on a study of caregiver burden at the end-of-life and several studies estimating the cost effectiveness of interventions to improve breast cancer outcomes.
The Burden of Time
More recently, Dr. Yabroff worked with colleagues to examine how much time cancer patients spend receiving care and the costs associated with that time. This effort emerged as one of her favorite studies, she said, because there has been little research done looking at patient time, and also because she personally spent an enormous amount of time getting treatment for her mother and then getting treatment herself.
The study, published in 2007, used linked data from NCI’s Surveillance, Epidemiology, and End Results (SEER) Program and Medicare to examine how often different services were used, such as hospitalizations and emergency room visits, and then applied time estimates to those services (including travel time). They also used several methods for valuing patient time.
“We estimated that the patient time burden associated with cancer care was considerable,” she said, citing the example of ovarian cancer patients who spent an estimated 410.6 hours during the initial phase of care after diagnosis compared with 42.4 hours for similar individuals without cancer. And the average time cost associated with ovarian cancer in the initial phase of care was $5,605, Dr. Yabroff and her colleagues found. But their estimates were probably low because they only included services Medicare pays for and did not include family and caregiver time.
In her latest collaborative study, Dr. Yabroff and her colleagues examined cancer incidence and survival data from SEER, U.S. population projections, and cost estimates based on linked SEER and Medicare data to develop cost projections for cancer care through the year 2020. That study predicted how many people would be in each phase of care (beginning, continuing, or end-of-life) and used cost estimates specific to each phase of care to project the overall costs associated with cancer.
Lessons Learned and Critical Questions
Last year, Dr. Yabroff received three NIH Merit Awards for contributions to her field. This year marks her fifth year being cancer free. The focus of her research continuously shifts, but her curiosity about how people receive medical care, including prevention, screening, and treatment for cancer, remains constant.
“When you see disparities in health outcomes,” she said, “you start thinking, are there ways health care delivery could be improved? Much of it is related to how people use health care.” Disparities in cancer survival, for example, can change based on how people use screening and treatment in different ways, she explained.
And after nearly 20 years of health services research, Dr. Yabroff has learned that there are many questions that influence this relationship.
“Do you have health insurance, and if so, is it employer-based? Do you have a usual source of care? Does your doctor recommend screening? If you are diagnosed with cancer, are you able to get a second opinion for treatment recommendations? I like to consider these kinds of questions,” she said. “We have a complicated health care system in the United States.”
How people use this complicated system, particularly as oncology evolves, is something Dr. Yabroff looks forward to documenting in the future, particularly with advances such as targeted cancer therapies. How will these therapies be recommended and used by oncologists? What groups of patients will receive these treatments? And what will be the costs associated with their use?
“I just hope that our research ultimately helps people receive the highest quality of care. Not just in terms of how patients and families interact with their clinicians, but in how they deal with employers and health insurers,” Dr. Yabroff said. “Because I know what effect those interactions can have on cancer treatment, quality of life, and how well people survive this disease.”