UCSF Research Inspires Launch of National Support Program
Jeffrey Belkora, PhD, a UCSF faculty member and director of Decision Services with the UCSF Helen Diller Family Comprehensive Cancer Center, and and Margaret Staffer, vice president and program director of the Cancer Support Community/San Francisco Bay Area.
Cancer patients across the country have a new way to navigate through difficult treatment decisions and communicate better with their doctors. “Open to Options,’’ which recently launched nationally, was developed in conjunction with UCSF to guide patients in making critical health decisions.
The project is designed to remedy a generations-old problem by helping patients become more informed and involved in their medical care. Bridging the communications gap between doctors and patients, Open to Options helps patients frame their concerns and formulate a list of questions which are then shared with their oncologists.
“Patients often freeze up during appointments with their doctors and forget to ask the questions that have been keeping them awake at night,’’ said Jeffrey Belkora, PhD, a UCSF faculty member and director of Decision Services with the UCSF Helen Diller Family Comprehensive Cancer Center.
In the days after a cancer diagnosis, patients are all too often catapulted into a frightening and bewildering landscape, required to make important medical decisions during a particularly vulnerable point in their lives. Overwhelmed by the complexity of treatment avenues, many patients struggle to even form questions for their doctors.
Open to Options, launched by Cancer Support Community — a national, nonprofit network that offers cancer education and support — provides professional counselors who help patients develop a concrete set of personalized questions and concerns to be raised with their doctors.
The service was inspired by Belkora’s program at UCSF, in which a team of student interns works with patients to help them develop questions for upcoming appointments.
Laura Esserman, MD, MBA, director of the UCSF Carol Franc Buck Breast Care Center, recruited Belkora to form UCSF Decision Services in response to studies showing that cancer patients often feel unprepared to ask questions about their medical treatment, and sometimes face communication barriers that impede their full participation in decisions. By writing a list of questions, patients become better informed and involved, which in turn leads to better psychosocial and in some cases physical outcomes, says Belkora.
The Decision Services program has been touted as a national model of care by the Mayo Clinic Center for Innovation and the U.S. Department of Health and Human Services.
As part of the new project, a checklist developed by Belkora called “SCOPED’’ assists patients in developing questions and arriving at decisions. (SCOPED stands for Situation, Choices, Objectives, People, Evaluation, and Decisions). Licensed mental health professionals are being certified in the use of the checklist, and it is being disseminated to hospitals, clinics, and community-based organizations in the United States and United Kingdom.
“Without this kind of support, patients may go along with suggested treatments without fully understanding all the ramifications,’’ said Margaret Stauffer, a newly-certified trainer from the Cancer Support Community office in Walnut Creek, California. “It’s critical for patients to be able to more fully reflect on their options and make informed choices that fully reflect their personal priorities.’’
The Walnut Creek program helped Stephanie Slade, 63, when she was diagnosed in January with non-Hodgkin lymphoma.
“Cancer patients have a lot to wrestle with,’’ said Slade. “I hadn’t been sick in more than 25 years, and it’s a scary spot to suddenly be in. This program is a wonderful service — it helps you clarify your thoughts as you try to figure out your options. And it gives you peace of mind to know that you are being pro-active and aware of all the possible risks and alternatives when facing a serious illness.’’
Open to Options is available toll free in English and Spanish at 1-888-793-9355, through select affiliate locations, and by visiting here. Phone consultations are offered in English or Spanish and take up to an hour depending on the number and complexity of questions. The Amgen Foundation is providing financial support.
Photo by Susan Merrell/UCSF