Breast cancer patients are using personal digital assistants to record their levels of pain, fatigue and depression and watch patient communication videos as part of a pilot study launched by researchers at the Ohio State University Comprehensive Cancer Center.
The study – the first of its kind in the country – is designed to teach breast cancer patients how to communicate more effectively with their physicians during chemotherapy treatment. The two-year project is funded by a $240,000 grant from the National Cancer Institute.
“Patients often have trouble talking to doctors about pain, fatigue or depression, and the doctors may also have trouble talking to patients about these symptoms,” says principal investigator Doug Post, a family medicine psychologist at Ohio State whose research focuses on interventions to improve communication between patients and physicians, “We hope to improve communication on both ends.”
Dr. Charles L. Shapiro, director of breast medical oncology at the James Cancer Hospital and Solove Research Institute at Ohio State, is the co-investigator on the study.
Before chemotherapy starts, 25 patients in the study receive a hand-held device and training on how to use it to complete weekly assessments that rate pain, fatigue and depression during chemotherapy. They are encouraged to watch 8- to 12-minute videos on the hand-held device the day before each scheduled office visit with their physician. For comparison, a control group of 25 patients experiences usual care for chemotherapy treatment.
“If these symptoms are not talked about at appointments and are not treated, they can worsen and reduce the patient’s overall quality of life,” says Post. “We want to prevent this from happening by encouraging discussion.”
Physicians will receive printouts of patients’ symptoms before office visits. Videos are tailored to a patient’s race and symptoms. Black patients view videos featuring a black physician and black patients, while white patients watch white physician and white patients.
“Based on how patients rate themselves each week, a video will come up on the PDA screen that teaches them how to explain the various symptoms to their doctors during the next office visit,” says Shapiro, who is also director of the Lance Armstrong Foundation’s Survivorship Center of Excellence at Ohio State.
“It’s important to record data on a weekly basis for an accurate assessment of what they are experiencing in ‘real time,’” Shapiro says. “This should improve patient care by addressing these fundamental needs during treatment.”
Each video features physicians and patients explaining how patients can talk to their doctor about pain, depression and fatigue, along with a role-play scene of a physician and patient interacting.
“If they’re not having problems with pain, they won’t watch a video about pain. They only watch videos on the symptoms they’re having problems with since their last chemotherapy treatment,” Post says. However, patients who are having significant problems with any symptoms will be prompted by the hand-held device to contact their physician immediately.
The videos also explain the PACE concept of communication between patients and physician: Presenting information, Asking questions, Checking understanding and Expressing concern.
“Often patients don’t tell their doctor everything during an office visit,” says Shapiro. “Or, patients may minimize their symptoms because they want to put on a positive front for their doctor, which often is not in their best interest.”
Post enlisted the help of his brother, Robert Post, who has a theater background, to direct the videos. Breast cancer survivors at The James participated in focus groups and star in the videos, along with several oncologists at The James, including Shapiro, Dr. William Hicks and Dr. Bhuvaneswari Ramaswamy.
Other Ohio State researchers involved in the study include Donald Cegala, Prabu David, Mira Katz, Ann McAlearney, Electra Paskett and Gary Phillips. Video production was provided by Dan Shellenbarger of Ohio Government Telecommunications.