Patient advocacy is, among other things, the provision of information and support to empower patients to confidently take control of their health. While patient advocacy exists in all facets of healthcare, it is especially crucial the realm of hereditary cancer syndromes, where targeted patient education can save lives. Therefore, in order to be the best possible patient advocate, it is extremely important that healthcare providers are meeting the informational needs of this unique population. There is a lot of information to cover with newly diagnosed patients (both those who are diagnosed with cancer and those who are diagnosed through genetic testing): cancer risks, ages of onset, available treatments and therapies, screening strategies, risk-reducing surgery options, cancer genetics, inheritance patterns, referrals to other providers, available patient resources- the list goes on. With so many topics that need to be discussed, I began to wonder if healthcare providers were delivering the appropriate amount information at the appropriate time.
While researching the current literature, I quickly realized that there was a significant gap in knowledge about the informational needs of women with Lynch syndrome. There was very little research regarding the discussion of cancer-related fertility risks, fertility preservation and risk-reducing surgeries with this patient population. It was not clear whether or not patients were receiving enough information about these topics to make informed decisions. This is surprising for a number of reasons. Women with Lynch syndrome are at an increased risk of having colorectal cancer at a young age and the available treatments for this type of cancer can impact a woman’s fertility. For young patients with cancer, there are fertility preservation options available that can reduce the risk of infertility. Women with Lynch syndrome are also at an increased risk for endometrial and ovarian cancer, for which the guidelines recommend consideration of a hysterectomy (removal of the uterus) and a bilateral salpingo-oophorectomy (removal of the ovaries and uterine tubes). Aside from the obvious impact on fertility, these surgeries create a surgical menopause, which can cause a wide range of health problems. Unlike many other hereditary cancer syndromes, Lynch syndrome can be caused by five different genes, each of which have different cancer risks. These differences in risk values are important to be aware of, especially when considering risk-reducing surgeries.
Major healthcare organizations and professional societies have released guidelines recommending the discussion of these topics with women in this patient population. But, there is no research on how healthcare providers carry out these guidelines in their own practice. I also struggled to find any evidence to prove whether or not these topics were effectively being discussed with patients, based on their own report. However, I did find many patient stories, in support groups and blogs like this one, that discussed the overall lack of information received about these topics.
Clearly evident on her website, Georgia has been tremendously honest and authentic about her experience with Lynch syndrome. She is an exemplary patient advocate, as the posts not only include her personal trials and triumphs but also provide a fountain of information and resources for other individuals living with Lynch syndrome. Her efforts have widespread implications: her sincere encouragement of others to take charge of their health care is empowering, and her frank recounting of her own health journey highlights a need for improved care for patients with Lynch syndrome. A central feature of this improved patient care is the need for better information delivery. I believe that such improvements will be possible if we gain a better understanding of the patients’ perspective, which will allow us to not only identify if current healthcare practices are successful but also identify areas for improvement.
If we don’t recognize the informational needs of our patients, how can we really call ourselves patient advocates? With my research, I hope to understand how women with Lynch syndrome are being educated about their fertility and identify ways to improve those conversations. By learning from your experiences, we hope to gather information that will help doctors, nurses and genetic counselors know how to address this complex topic in women with Lynch syndrome. I invite you to participate in this survey to share your opinions!
Thank you for your consideration.
Genetic Counseling Program
University of South Carolina Class of 2017