In Part 1, Sally Dominick, Project Manager and Samantha Bailey, Study Coordinator for Fertility & Parenthood, introduced us to the organization they work with and shared about some of their current studies.
Launching successful studies can come with challenges. Sally & Samantha, what are a couple of your top challenges creating a successful study?
Our main challenge has been reaching diverse YA cancer survivors, including by cancer type, racial and ethnic background, and desire for children (those who want to become parents and those who do not).
We want to include a representative group of young survivors in our research so that our results are a more accurate reflection of everyone’s reality. Another important goal is to enroll a racially and ethnically diverse population of young survivors so that we can better identify potential disparities in reproductive health information, concerns, and outcomes.
Why are studies like this important?
Young cancer survivors have identified fertility issues as a priority. However, research on the fertility concerns and reproductive outcomes of young survivors is sparse. Preliminary studies suggest that healthcare providers are not adequately addressing the fertility information needs and concerns of their young patients.
This oversight can have a negative long-term impact on survivors’ quality of life. There is also very limited information on the impact of cancer and cancer treatment on future fertility. Survivors and their care providers have few guidelines to help them in making choices about treatment, fertility preservation, or parenthood options at the time of diagnosis or later in survivorship.
We hope to make an important contribution to this developing area of clinical care and research. Important future research efforts include:
1) identifying groups with the greatest need for services and information related to fertility and parenthood and developing programs to fill that need
2) filling information gaps regarding the expected impact of treatment on fertility based on a range of individual and cancer characteristics
3) evaluating fertility concerns and reproductive health across the course of survivorship
4) investigating the association between reproductive health and quality of life, and
5) evaluating potential racial and ethnic differences in fertility concerns and reproductive outcomes across the course of survivorship.
The results of this research will be particularly relevant to young survivors between the ages of 15 and 39 and their family members, advocates, and care providers.
How each of you get involved in this mission?
Sally ~ I am passionate about issues related to cancer survivorship, which includes reproductive survivorship. As a new member on the Fertility and Parenthood team, I am excited to apply my knowledge of health behavior and health education to improve the health and wellbeing of adolescent and young adult cancer survivors.
Samantha ~ I wanted to get involved in cancer research as part of my Masters degree. The opportunity arose for me to work with this group conducting research with adolescent and young adult cancer survivors. I wanted to be a part of this research because of a student I used to teach who was diagnosed with cancer. I saw the struggle he went through and, ever since then, I have wanted to help this population.
How has helping others played a role in your lives?
Sally ~ As a researcher, I have always been driven to be involved in projects that are beneficial to cancer patients and survivors. I want my research to directly impact the lives of those around me; working with the Fertility and Parenthood team allows me to interact with young cancer survivors and discover ways to improve their quality of life.
Samantha ~ Helping others has always been something I am passionate about. That desire is behind every decision I make. Working with the Fertility and Parenthood team I feel like I am actually making a difference in peoples’ lives.
How can readers learn more or sign up to participate in a study?
Information on our Fertility and Parenthood After Cancer study is available on our website. You can also call us at 858-822-0768 or email email@example.com.
Fertility Information Research Study (FIRST): Please call the national fertility preservation hotline at 866-708-3378 (FERT) or email firstname.lastname@example.org.
Is there anything else you would like to share?
Our work with the adolescent and young adult cancer survivor population has shown us the strength and resiliency of this population. We are honored to be able to work with this population and hope that our studies will positively impact their lives.
Thank you to Sally & Samantha for educating us on this highly important topic, particularly for the YA community. If you know a YA impacted by cancer or a health care provider working with YA survivors, please pass this on…and if you are a YA survivor, please consider participating in current studies to make a difference in the arena of fertility for others who may share your journey.