A survey to help in the development of a web-based, multimedia treatment decision aid for patients with ulcerative colitis showed that patients are more worried about complications of their disease than the risk of experiencing side effects of the medication they use.
The findings were published in the journal Inflammatory Bowel Diseases, titled “Patients with Ulcerative Colitis Are More Concerned About Complications of Their Disease than Side Effects of Medications.”
In 2014, Emmi, a provider of interactive patient engagement solutions, joined forces with researchers at the Dartmouth-Hitchcock Medical Center (DHMC) in New Hampshire to survey ulcerative colitis patients in the U.S. and Australia and assess the issues that were important to them, and if patients were interested in participating in treatment decisions.
Of the 460 patients who responded, 98 percent of whom indicated that they wanted to know more about their disease than just basic facts, and 51 percent stating they want to have an in-depth understanding. Many patients (87 percent) wanted to take part in treatment decisions.
The survey also revealed that while 37 percent admitted their greatest concern was the risk of colon cancer and 29 percent feared the need for an ileostomy, only 14 percent listed drug side effects as their main concern, showing that complications of their disease was the main concern of patients.
“As clinicians, we spend a great deal of time helping patients with ulcerative colitis understand the risks and side effects of the medication options,” Corey Siegel, associate professor of medicine and director of the Inflammatory Bowel Disease Center at Dartmouth-Hitchcock Medical Center, said in a news release.
“However, these findings help us recognize that those may not be their greatest concerns. We need to make sure we are helping patients understand how the disease will affect their future and help them make informed treatment decisions.”
Emmi later used the findings to helpdevelop a web-based decision aid to help patients navigate the complex reality of ulcerative colitis management. The tool, developed in collaboration with physicians from Dartmouth-Hitchcock and other hospitals, as well as patients and a decision scientist, is designed to give patients to get a more thorough understanding of their treatment options, allowing them to discuss their treatment with their physicians.
The development process used a patient focus group to test how clear and effective the tool was in addressing the anxiety associated with surgical treatment options. According to the release, focus group participants were not as negative to surgical options after viewing the program.
“I felt a little relieved watching the surgery options because I’ve always been so scared of that,” said one focus group participant. “I didn’t think the risks associated with these surgeries were any greater than any other surgery. You can have a normal life afterwards.”
“Effectively engaging patients in their health requires an intimate understanding of people,” said Emmi CEO Devin Gross. “Studies like this help us create effective programs and tools specific to the needs and concerns of real patients. Only then can we truly empower people to make informed decisions in their care.”