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NIH grant to fund study of fertility planning tool for cancer survivors
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The NIH awarded a 5-year, $693,000 grant to The Feinstein Institute for Medical Research to develop and test a digital health platform to help young female cancer survivors evaluate their options for having children and plan for the future.
In the first phase of the project, researchers will build a web-based decision support and planning tool. In the second phase, female cancer survivors will use the tool to help make fertility decisions, then provide feedback.
If successful, larger clinical trials will be conducted to test the tool.
“My research team found that even if young women make fertility plans before undergoing cancer treatment, they cannot implement their plan because of unexpected costs or being unsure if they will face menopause early,” Catherine Benedict, PhD, assistant professor at The Feinstein Institute for Medical Research, and assistant professor in the department of medicine at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, said in a press release. “With the NIH’s support to build a web-based tool, patients will have access to information and options so they can tailor their own fertility plan and be prepared for barriers they may encounter.”
HemOnc Today spoke with Benedict about the concept, the need for additional tools to help female cancer survivors evaluate fertility options and make decisions, and the timeline for study completion and data availability.
Question : How did you and your colleagues come up with this concept?
Answer : Clinically, we were seeing so many young people who had been diagnosed with cancer, undergone successful treatment and gone back to their normal lives, as one would expect. However, they would come back years later ready to start a family and it was too late. They had experienced premature menopause as a result of their cancer treatment. My colleagues and I saw that fertility was not being addressed in posttreatment survivorship care. There was a lack of follow-up during the posttreatment time period, in which patients needed to be counseled about fertility risks, their goals for the future in terms of becoming parents, and what they needed to do or think about in terms of planning ahead. At the same time, I was working closely with The Samfund, a patient organization dedicated to addressing the financial impact of cancer among young adults. I help them review patient grants for financial assistance for family building, including in vitro fertilization, surrogacy or adoption. I saw that survivors were so overwhelmed and unprepared for the cost of these options. We saw the desperate strategies people were using to cover costs, including running up credit cards and depleting their life savings, because having a child was so important to them and their partners. There was a striking need to ensure that survivors were counseled around what this road might look like so that they can plan ahead.
Q: How will the two phases of the study be conducted?
A: The first phase of the study is to create the tool/website. We will use a responsive design approach so that it can stand alone as a website or adapt to smartphones. The content of the website will be based on another study we are conducting, also funded by the NCI, in which we are surveying and conducting in-depth one-on-one interviews with young female survivors about their fertility experiences, how they are approaching family building, as well as what types of support they think they might need. We will use this information to build a website that they are telling us they wished they had and want. The idea is that this can be appropriate for survivors during any phase of their family-building goals — whether they do not think they are ready to have children for another 10 years or whether they are ready to start the process now.
For the second phase, we will conduct a pilot study to quantitatively assess whether the tool achieved the goals that we hoped it will achieve. We will survey survivors at baseline and again after they had access to the tool to see how their knowledge of fertility and family-building options change and whether they feel more prepared and confident in their ability to become parents in the future.
Q: When will data become available?
A: We hope to have the website built within the next year, and the pilot study will take another 2 years. Data will become available between these time points, but the full study on the tool will take about 5 years to complete.
Q: What are the potential implications of having a low-cost support tool for the increasing number of female cancer survivors?
A: The potential can be great. Infertility after cancer has been dubbed a ‘double trauma,’ and it is such an important topic. We hope that this tool will allow patients to have access to support in a low-cost way. This tool can give them the support they need to know how to prepare medically and financially to become parents in the future. Planning ahead can help survivors and their partners have the best chance for reaching their goals.
Q: Is there anything else that you would like to mention?
A: We will soon begin recruitment for this study, and we are always conducting studies to specifically learn about young adult cancer survivorship and to develop the support, resources and tools that they need and want. Anyone who would like more information may call more (516) 600-1428. – by Jennifer Southall
For more information:
Catherine Benedict, PhD, can be reached at The Feinstein Institute for Medical Research, 350 Community Drive, Manhasset, NY 11030; email: cbenedict@northwell.edu.
Disclosure: Benedict reports no relevant financial disclosures.