Since September 2015, I have had the opportunity to participate on an inter-disciplinary Institute of Medicine committee of the National Academies of Sciences, Engineering, and Medicine to review the state of the science in ovarian cancer and formulate recommendations for action to advance the field. The charge to the committee by the Center for Disease Control was to:
- Summarize and examine the state of the science in ovarian cancer research;
- Identify key gaps in the evidence base and the challenges to addressing those gaps;
- Consider opportunities for advancing ovarian cancer research; and
- Examine avenues for translation and dissemination of new findings and communication of new information to patients.
The report, officially released today, emphasizes that “ovarian cancer is not just one disease; rather, it is a constellation of distinct types of cancer involving the ovary.” The committee recommends that research into the most common and lethal epithelial subtypes, high-grade serous carcinoma (HGSC), should be given priority. Recent research suggests that many of these carcinomas do not actually arise in the ovary but rather metastasize from other sites of origin.
Despite need to focus on HGSC, there is need to understand the underlying biology, risks, effective treatments and survivorship needs based on the different sub-types. An essential foundation for all future research is the development and “implementation of a single, uniformly applied nomenclature and classification scheme with standardized diagnostic criteria” to describe the characteristics of each subtype.With respect to prevention and early detection, identification of women at high risk through genetic testing of all women with invasive ovarian cancer and cascade testing of relatives of women who test positive can help to guide prevention strategies for women at high risk. Additional research is needed to identify additional genetic and non-genetic risks for ovarian cancer. While non-surgical (e.g.use of oral contraceptives) and surgical (salpingo-oopherectomy) approaches are available for prevention, additional research is needed to understand the relative risk/benefit ratio for the different subtypes.
Of great concern to our committee was strong evidence that there are serious disparities in access to the standard of care. In fact, less than half of all women receive today’s standard of care and older women, minorities, and women with low socioeconomic status are more likely to receive substandard care. Reducing disparities in access is a critical need for research and practice.
The committee also emphasizes that as we are developing a better understanding of the biology and diversity of the subtypes of ovarian cancer, there is great potential for precision medicine approaches to guide current treatment and to inform the development of novel treatments with better efficacy. Furthermore, there is a need for research on nonpharmacologic interventions such as exercise and social support that may affect response to treatment.
Finally, the committee recommends a focus on research that not only strives to increase the quantity, but also optimizes the quality of women’s lives. Much of this research hinges on tapping into the voice and expertise of our patients. Barriers to the systematic assessment of the physical and psychosocial effects of cancer and its treatment in research and clinical settings is essential to advancing our understanding of how cancer and treatment affects women’s lives. In this way we can better identify women who are at high risk for poor physical and psychological outcomes and develop patient-centered pharmacologic and non-pharmacologic symptom and self-management interventions to improve the quality of women’s lives at all phases of the disease trajectory. Quality of end of life is also an important issue, as many women with ovarian cancers receive aggressive treatment up until the end of their lives. We currently have inadequate knowledge to guide clinicians in predicting when an ovarian cancer will no longer respond to treatment and a woman and her family would benefit from transition to hospice and end-of-life care.
Our research team that includes nurse scientists, physicians and researchers from Pitt’s School of Nursing, and the Gyncologic Oncology Cancer Division and the Behavioral Oncology Program at the University of Pittsburgh Cancer Institute has focused on the development and testing of efficient, Internet-based systems to assess symptoms and provide individualized support and education to help women manage the wide range of psychological and physical symptoms associated with ovarian cancer and its treatment. If effective, we hope that these systems could be made widely available to clinicians and survivors to help fill gaps in high priority supportive care research and address disparities in access identified in the IOM report.
Heidi Donovan, Ph.D., R.N., is the University of Pittsburgh School of Nursing’s Vice Chair for Research and Director of its Office of Community Partnerships. She is also a member of the University of Pittsburgh Cancer Institute Behavioral Oncology Program.