Young adults with cancer speak about balancing hope and risk

The first Clare Project study asked about values and care preferences. Project leaders are now building on that foundation.

by Acting Assistant Investigator Marlaine Figueroa Gray, PhD, and Associate Investigator Karen J. Wernli, PhD, Kaiser Permanente Washington Health Research Institute

We have exciting news to share from the Clare Project: Our first paper is published in the

Journal of Adolescent and Young Adult Oncology (abstract).

The Clare Project focuses on helping adolescents and young adults (AYAs) with advanced cancer get better care. Karen’s overall goal with this project is supporting AYA cancer patients, especially if they have life-limiting illness, in making clinical decisions. Like all Clare Project studies, this one started with the AYA cancer patients themselves, describing how they make medical decisions. We interviewed 12 AYA patients with advanced cancer and five medical professionals who care for AYAs with cancer about decision-making processes. This blog shares the highlights of our results and how we will build on them.

A balancing act

Our first publication is called “Balancing Hope and Risk Among Adolescent and Young Adult Cancer Patients with Late-Stage Cancer,” because that was a main theme. For the young adults we talked with, balance meant weighing the risks of treatment side effects against potential but uncertain benefits from treatment, especially when curative intent was not the overall goal. When our study participants took the risks, their hopes included being cancer-free, spending time with their children, or starting a family.

Other issues our participants talked about point to how we can improve care for this unique group of cancer patients. Some challenges we are addressing in our next studies include:

· AYAs with late-stage cancer want (but often don’t get) clear information about diagnoses, treatment risks, and side effects.

· AYA are offered aggressive treatment and often choose it themselves, but still want to talk with their physicians and care teams about what these decisions mean for them and their loved ones. (See above about clear information!)

· Clinicians should ask AYAs with cancer about their values, preferences, and needs — and these might change over time. These conversations can help medical professionals be more confident in assisting their patients, especially when treatment is no long curable and more about reducing the size of the tumor.

· AYAs with advanced cancer want to talk about mortality with their medical team and their family and have psychosocial support.

We hope our first publication will help AYA cancer patients, clinicians, and clinical staff communicate better for more patient-centered, informed choices about care.

A bridge to the next phase

This first phase of the Clare Project is a bridge to our other ongoing and future studies. Based on these initial results, we’re studying more specific topics. For example, in our first interviews, AYA cancer patients talked about family building, so we have been studying decision-making around fertility preservation and starting a family. Marlaine will present these results at a meeting soon. We’ll publish the results after that and we’ll continue to study this topic.

We’re studying end-of-life care for young adults with cancer, for example the intensity of care, especially in the last 14 to 30 days of life, using data from across the country. We applied for funding to compare this care in the United States and Canada. Our goal is learning how to make sure that AYA cancer patients receive end-of-life care that is in line with their preferences.

We’re grateful for the study participants who have spent time telling us about their experiences. We heard you and are using what you told us to guide the Clare Project as we move forward. We want to use what we’re learning to design ways for medical systems to better support young adults with cancer.

Please watch for more results. We’ll blog about them here and we’ll post about them on our Twitter and Facebook accounts.