The Clare Project -What matters most to young adults with cancer as they make choices about fertility preservation?

In the past the #gyncsm community has held chats about fertility and life as a young adult following a gynecologic cancer diagnosis. Recently we learned about the Kaiser Permanente Washington Health Research Institute's Clare Project. The Project is a research study to understand how adolescent and young adults with advanced cancer make medical decisions. 
This blog post first appeared in Medium. 

What matters most to young adults with cancer as they make choices about fertility preservation?

In 2016, we launched The Clare Project to understand how adolescent and young adult (AYA) patients with advanced cancer make medical decisions. Our study is a memorial to a family member, Karen’s sister-in-law, who died in 2014. Our goal is to improve care for young people with cancer by asking them what they need, want, and value.

We spoke to 22 patients, caregivers, and clinicians sharing their stories with us. We heard that AYA patients are balancing hope of increased survival with the risk of treatment that can be debilitating and at times fatal. Patients recognize that they are essentially playing a “chess game” they will eventually lose to cancer, but they don’t want to use up all of their pieces too soon. We learned that AYA want clearer communication from their clinicians about their prognosis, and when additional treatment will no longer prolong life.

We also learned that one important concern was the decision to undergo — or not undergo — fertility preservation. We have now launched a second phase of our study to understand how this decision is made, and how young adults with cancer think about family building.

We are looking for young adults, aged 18 or older, who were diagnosed with cancer between the ages of 15–39 years, and are willing to do a one-time phone interview. We also want to talk to clinicians who care for young adults who were diagnosed with cancer between the ages of 15–39 years.

By sharing your experience with us, you will help us understand what matters most to young adults with cancer when making decisions about building a family. It is important that we hear first-hand from real people who have had to make decisions about cancer care and have thought about whether and how to have a family.

What does the interview involve?

• The interview will ask questions about your experience with cancer care and fertility preservation or other forms of family building.
• If you are a clinician, the interview will ask about your experience helping young adults with cancer make decisions about fertility preservation or other forms of family building.
• It will last about an hour.
• The interview will be recorded and written down, but will not include your full name.
• The interview is voluntary.
• You will receive $50 as a thank you for your time.
• You must be at least 18 years old to join this study.

How do I volunteer or find out more?

If you want to be part of this study or learn more about it, please review our study information sheet. Email the Clare Project if you want to join the study or if you have questions. We hope to hear from you soon.

FB page is: https://www.facebook.com/theclareproject/

Twitter handle is: @clareproject

Kaiser Permanente website on the Clare Project: https://www.kpwashingtonresearch.org/get-involved/be-part-study/clare-project/

Dee

#gyncsm Co-Founder