$600,000 in awards against ovarian cancer for Fred Hutch and UW researchers

HOPE for patients and providers

Ovarian cancer is the eighth-most common cancer for women in the U.S., but the fifth leading cause of cancer death for women, according to the National Cancer Institute. The American Cancer Society projects that nearly 21,000 women in the U.S. will be diagnosed with the disease each year.

Much of the reasoning for poor prognoses for ovarian cancer is due to late diagnoses, said Shen, an associate professor in the Fred Hutch Clinical Research Division. Symptoms like fatigue, weight loss and discomfort are vague and associated with aging and a myriad of other disorders or illnesses.

“Many patients follow a very specific trajectory,” explained Shen. “They get diagnosed late in their illness, and many of them have recurrences.”

Adding to an already difficult diagnosis, many patients expressed an overall lack of support for spaces tailored to people with ovarian cancer. In response came HOPE, an intervention to reduce hopelessness and helplessness in patients with recurrent ovarian cancer.

The program brings together colleagues at Fred Hutch (Casey Walsh, PhD); UW (Barbara Goff, MD, and Heidi Gray, MD), and non-academic partner Robyn Castellani.

In HOPE workshops, patients share the challenge and pain of their diagnosis. From there, they work with social workers and creative storytelling experts, learning techniques to manage and cope with their pain while building community and connection. According to Shen, the program is pilot testing both in person and virtual workshops to broaden access for patients and clinicians alike.

HOPE for clinicians, the new adaptation of the HOPE program, brings together small cohorts of clinicians in gynecologic oncology in weekly 90-minute workshops led by a social worker and expert in creative storytelling. HOPE for clinicians focuses on both equipping clinicians to support their patients with recurrent ovarian cancer, using the same tools and techniques in the original HOPE intervention for patients, as well as supporting them in their own burnout as clinicians. HOPE for clinicians equips clinicians on ways to give support and embeds resources that directly support clinicians themselves.  

The program teaches coping strategies centered in storytelling, the science behind them and how to share these strategies with patients. The second half of the workshop provides prompts to reflect on positive aspects in clinicians’ lives, which they share with their cohort.

“It’s a group share where they reflect on their own stories, challenges and what’s working well for them,” said Shen.

Caring for compassion fatigue

Shen shared that both patients and clinicians had requested a version designed for clinicians after the initial patient pilot workshop. While patients face the difficulty of life with ovarian cancer, their providers also face the emotional burden of providing advanced care.

“They’re facing patients who are often dying from their illness,” explained Shen. “They feel like they don’t have anything to offer when treatment options run out, and they can’t support them in a way that feels meaningful.”

What many of these providers are experiencing is a term called compassion fatigue, said Shen.

“When you're seeing patient after patient and you're having to break bad news over and over again, a coping strategy often emerges from that high level of burnout,” she explained. “In a self-protective way, you fatigue out and you feel less compassion towards your patients.”

The downstream effect of this fatigue manifests itself in the patient-provider relationship. Shen added that patients can feel this lack of empathy, and therefore less of a connection to their provider.

Compassion fatigue is a coping strategy that manifests on its own. The HOPE program addresses the feeling of emotional burnout and provides strategies and frameworks that encourage support and connection between providers and their patients, while providing a place of community and support.