Breast cancer patients find guidance through online program
By Glenna Picton
New diagnosed breast cancer patients face a number of challenges. The most difficult include understanding the diagnosis and making informed decisions about treatment.
These decisions are particularly challenging for women with limited knowledge of health issues or those who don’t speak English.
A new online program called "The Patchwork of Life" developed at Baylor College of Medicine can help guide women from diagnosis through after treatment. The easy-to-understand program provides the information through stories of fictional women going through the same process, helping the real-life women better understand the implications of their decision, said Dr. Maria Jibaja-Weiss, director of the Office of Outreach and Health Disparities in the NCI-designated Dan L. Duncan Cancer Center at Baylor College of Medicine.
Easy-to-use tool
"A woman facing decisions about her breast cancer surgery will have to analyze many new concepts and interpret a lot of different, hard-to-understand information," said Jibaja-Weiss. "We have developed a tool that is easy to navigate and provides the information to these patients in a realistic, understandable format that helps them make an informed decision."
Breast cancer patients can choose from a variety of characters and then view short stories beginning from diagnosis to after treatment.
There are four common themes to the stories, including providing background on breast cancer, addressing common misconceptions about diagnosis and treatment, providing information about treatments and their outcomes, and walking patients through the steps of making a surgery decision.
For some patients, misinformation and misconceptions may cause them not to seek treatment, said Jibaja-Weiss, so it is important that they be addressed.
Ultimately, there may be two surgical options that a patient diagnosed with early stage breast cancer may undergo, Jibaja-Weiss said – the removal of the tumor-containing breast lump (lumpectomy or breasts conserving surgery) or the removal of one or both breasts (mastectomy).
Be informed
"There are very different medical outcomes associated with each option," Jibaja-Weiss said. "All women must be properly informed so they can discuss this important decision with their doctors."
Developed by a multidisciplinary group of breast cancer specialists, surgeons and educators, the program can be viewed in both English and Spanish.
During the program, a narrator reads the information aloud to help women with limited reading capabilities, Jibaja-Weiss said.
There are visual descriptions and question-and-answer sections that allow the patients to interact while watching each story.
"The text is minimal and easy to read," said Jibaja-Weiss. "The stories and scenarios with family members, friends and physicians provide a sensible format for these women to comprehend and learn."
In 2008, The Patchwork of Life received a silver award from the Web Health Awards, a program that recognizes outstanding web-based health-related content for consumers and professionals.
Novice computer users have found the tool easy to navigate, Jibaja-Weiss said.
"They simply click 'next' on each page to go from one screen to the next," said Jibaja-Weiss. "For those who would rather skip around the program, a menu panel is available for exploring the various sections."
The program is updated as new treatment guidelines and practices are adopted, Jibaja-Weiss said.
Offer of hope
"This tool has given hope to a lot of women who initially thought of giving up," said Jibaja-Weiss. "Following these stories and adapting the information has allowed them to connect and decide what course is best for them. They have watched these women make decisions and live to see the consequences, and they draw strength from knowing they can too."
