Published September 12, 2013
You’re waiting to hear the results of your annual mammogram when the technician tells you to get dressed and go back to the waiting room: The radiologist wishes to speak with you.
More than 200,000 women will get a version of that message this year when they find out they have breast cancer. They will have to decide where to seek treatment and wait for an appointment. This appointment will be the first of many conversations about their diagnosis and choices for treatment within the upcoming weeks. Few women, however, will have a talk with a health care professional about their emotional health needs.
What women haven’t had is a place to which they can turn in the initial days after diagnosis for research-based information focused on the thoughts and emotional concerns important to them as they deal with being a person newly diagnosed with cancer—a place that is personalized, private and allows them to consume the information at their own speed.
Robin Lally, assistant professor of nursing, has developed CaringGuidance™: After Breast Cancer Diagnosis, an Internet-based, self-guided and tailored psychoeducational program for women newly diagnosed with breast cancer.
“Right now, we are recruiting women to participate in a pilot clinical trial to learn how women will utilize the program and its effectiveness,” says Lally.
Lally, who developed her program with an American Cancer Society Mentored Research Scholar Grant she received in 2011, has devoted her career to understanding how women adjust to breast cancer.
“My work focuses on the stressful period just following receipt of a breast cancer diagnosis,” she says. “Since many women receive their diagnosis from a mammography center or their general practitioner and then must identify a clinic and wait to see a breast surgeon, they are often left alone to deal with their anxiety. Through this program, we hope to intervene during this critical time by addressing coping and adjustment needs early.”
Caringguidance.org, the Internet-based system she has developed, has distinct advantages for delivering the information these patients may need. An Internet-based format will allow women to be reached as soon as possible after a diagnosis, Lally says. It also allows the patient to control the rate at which she acquaints herself with the diagnosis and related information. The patient receives the information in private and in a consistent, tailored and repeatable way, in a manner that supports her emotional well-being. The information is also delivered in a nonjudgmental way.
Questions about to whom and how women reveal information about the diagnosis are extremely important to women, says Lally. “The program includes information for women on how to have conversations about their diagnoses—conversations they may find difficult—with spouses, family, friends and even supervisors.”
A unique aspect of the program is that the topic areas covered were determined based on questions expressed by newly diagnosed women who Lally had interviewed as part of previous research. These questions include “Are my reactions normal?” “What does my diagnosis mean?” “Who am I now?” and “What are the strategies to care for myself?”
She says that CaringGuidance™: After Breast Cancer Diagnosis also is unique because it is the only Internet program of which she is aware that focuses on:
Lally plans to enroll 80 newly diagnosed women (40 intervention and 40 control) in the pilot study. That study will run for approximately a year and a half with help from Roswell Park Cancer Institute, Windsong Radiology Breast Care Center and other organizations that have agreed to distribute information and flyers about the study.
She also is collaborating with UB’s Center for Computational Research, which will provide software engineering support and hosting and security for CaringGuidance™ and with OtherWisz Creative Corporation in Elmwood, N.Y., for design and programming.
Future plans include the addition of a learning module for family and friends who support women with newly diagnosed breast cancer. Lally was awarded grants from the New York Cancer Research Fund and the Foundation of New York State Nurses to develop that module.
Women recently diagnosed with early stage breast cancer who are interested in learning whether they are eligible to participate in the clinical trial of CaringGuidance™ After Breast Cancer Diagnosis should contact Lally at firstname.lastname@example.org or 716-829-2137.
Kudos to Robin Lally for the insight she is showing in designing this program! Participation in such a program should help alleviate, to some extent, the emotional turmoil a newly diagnosed patient endures. Much success to all involved in this project!