June 29, 2017

What young adults with advanced cancer are telling The Clare Project

Patients, families, caregivers, and providers are talking to researchers about care decisions and social media communities. Here’s what they’re saying.

by Kaiser Permanente Washington Health Research Institute Associate Investigator Karen Wernli, PhD, Research Associate Marlaine Gray, PhD, Senior Research Associate Evette Ludman, PhD, and Project Manager Tara Beatty

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 advanced-stage cancer by asking them what they need, want, and value.

We spoke to 22 patients, caregivers, and clinicians from across the United States who shared their stories with us. We’re excited to report what we’ve learned from these interviews as our first early results. Our team presented these findings this spring at the American Society of Preventive Oncology meeting and the Pacific Northwest Palliative Care conference in Seattle. Here are some of the key results we shared.

Playing a chess game and needing better communication

One focus in our first round of interviews was making clinical decisions in the absence of clear data about treatment effectiveness. We learned:

  • 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 their pieces too soon.
  • AYA patients are willing to undergo experimental treatment, in case it might “work” and cure them or increase their survival time.
  • Communication is poor between clinicians and AYA patients about prognosis of their cancer state, and when additional treatment will no longer prolong life.

Learning from online communities

We have results that could improve communication with AYA patients with cancer. When we started The Clare Project, we explored using social media to connect with people who could tell us about their experiences. Through Facebook, personal blogs, and especially Twitter, we found diverse online communities that AYA patients with cancer use for treatment advice, encouragement, and emotional support. We’re still learning the best ways to communicate online with patients. But we were surprised at how well we connected with AYA patients with advanced-stage cancer through social media outlets. We hope other cancer researchers and providers can learn from what we know so far:

  • AYA patients use Twitter to find each other because they might not have a nearby group of peers. Twitter and other social media sites provide access to a supportive and necessary community.
  • Patients use Twitter for access to others with similar experiences, to find out how they made treatment decisions and to share expertise.
  • Through online engagement, AYA patients aim to build a community of peers and engage in social activism.
  • Online engagement makes AYA patients feel less isolated and more hopeful about clinical decision making.
  • However, Twitter was not as useful for connecting with family and friend caregivers, who are less likely than patients to seek the support of strangers through this social media tool.
  • For researchers, though, we found that tweet chats are a great way to engage with multiple clinicians from a variety of clinical backgrounds (e.g., oncology, social work, nursing), and our discussions in tweet chats resembled a virtual focus group.

Based on our first results, we urge clinicians to work towards clear communication with patients, even in circumstances with uncertainty.

We thank all the people who have talked with us. Your stories continue to live with us. And your participation highlights how AYA patients want to speak about their experiences. Talking with patients, caregivers, and clinicians provided us with rich information about a particularly important group of patients. We’ll continue use this knowledge in The Clare Project.

Please keep in touch with us on Twitter @clareproject and Facebook where we’ll announce the next phase of our work. Contact us at clareproject@ghc.org if you are interested in participating in our study. Our next research topic is cancer and fertility planning.

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