Listen Up: Identifying the Unmet Needs of Patients
PATIENT PERSPECTIVE

Nurse Manager Naomi Fitzgibbon leads new programs to overcome the neglect of metastatic breast cancer (MBC) patients, giving special focus to psychosocial needs and cognitive impairment.

 

Naomi Fitzgibbon, Registered General Nurse and Cancer Information Service Manager with the Irish Cancer Society (the Society), has led in support and advocacy for breast cancer patients in Ireland for over 12 years. After working as a cancer nurse in Dublin, in 2003 Fitzgibbon began a new role with the Society’s Action Breast Cancer program, drawing on her clinical experience to explore and address the significant gaps in information and support for breast cancer patients in the country.

In her first years with the Society, Fitzgibbon identified specific needs of younger patients and trained peer-to-peer volunteers to build a network of support. Since then, she has designed public awareness campaigns and training programs for health care providers. Her projects have gone a long way to improve services for breast cancer patients in Ireland, but over the years, one shortfall became very clear: not nearly enough was being done to address the needs of women with metastatic breast cancer (MBC). In fact, little attention had been given to even identifying these needs.

What’s more, Fitzgibbon noticed that women with advanced breast cancer rarely contacted the Information Service’s Cancer Helpline—the stark truth was that these women were alienated even within the cancer support community. In hopes of tackling the problem, Fitzgibbon brought together a group of women with MBC, homing in on their unmet needs. She found these were quite different from early breast cancer patients’ needs. "What they wanted was something effective, something distinctive, something for themselves," Fitzgibbon said.

Since then, ICS has widened its focus on MBC dramatically. Crucially, Fitzgibbon worked to establish a peer-to-peer support and education program specifically for women with MBC — an eight-week program where patients get together in a safe environment and explore topics from nutrition to psychosocial aspects of the disease. In addition, group members have monthly access to a clinical psychologist. Following on the success of this Dublin-based program, the plan now is to expand its reach. "We’re rolling this out to the rest of the country," Fitzgibbon said. "Most of our patients are not in Dublin and we don't want them to have to travel, especially because these women are often more unwell than other cancer patients."

Conspicuous among MBC patients’ overlooked needs, Fitzgibbon found, is attention to the significant cognitive impairment they face in the form of stress and fatigue. Fitzgibbon believes it is important to find ways to help patients improve their everyday functioning and quality of life. To this end, she is leading a collaborative research initiative to assess the effect of these problems for patients and identify ways to alleviate the burden and help MBC patients restore their sense of productivity and empowerment.

The end goal for Fitzgibbon, she said, is to create and pilot a "unified tool to identify these patients’ cognitive impairments, and really provide them with support. This is long overdue and we need to do more for these patients".