Patients trying to decide between two surgical options for the treatment of ulcerative colitis found information supplied by doctors to be "believable" but not very "useful," according to a small pilot study at the University of California San Francisco.
The study was based on responses from 25 patients who were questioned about the research they did before meeting with a surgeon and the sources of information they considered most useful. An abstract of the study was presented at Digestive Disease Week in Washington.
Lead author Jessica Cohan, MD, of the UCSF Institute for Health Policy Studies, said the pilot was designed to generate preliminary data about what kind of information patients feel they need to make decisions about surgical options.
Ulcerative colitis patients considering surgery are strong candidates for shared decision making, because "No. 1, they want to be involved, and, No. 2, they are deciding between two equally effective surgical options," Cohan said.
Surgical options for ulcerative colitis include end ileostomy, which requires the use of a colostomy bag, and ileal pouch-anal anastomosis (IPAA), which does not. Researchers recruited study subjects from three colorectal surgery clinics, including a tertiary referral center, an HMO, and a safety net hospital. They measured patient interest in decision making and queried them on how they prepared before meetings with surgeons. The survey also asked which sources of information they considered most useful.
Patients said they were most likely to use information from the Internet and their doctors. The great majority (96%) of patients talked to others about their decision, including friends, parents, and spouses. These conversations were "extremely" or "very" important 58% of the patients reported.
Eighty-eight percent of the patients reported that they preferred to make a final decision about procedure type "on my own" or "on my own after seriously considering my doctor's opinion."
Sixteen of the 25 patients favored IPAA -- primarily to avoid the colostomy bag -- before meeting with a surgeon. Two favored ileostomy, and seven reported that they did not have enough information to make a decision. A follow-up study with postsurgical patients is in progress. Cohan says the goal will be to see how patients feel about the decision-making process after living with the consequences of the surgery they chose.
Most Credible, Least Useful
Although patients reported that information provided by physicians was the most credible, they also rated it as least useful. The study did not collect information about what kind of information the patients found to be useful -- a term Cohan described as somewhat "vague."
"There are a lot of potential components that go into making something 'useful,'" she said. However, the findings suggest "perhaps we're not giving them the type of information that they want."
The kind of information typically supplied to surgical patients includes brochures about complications and cure rates. Cohan has found, however, that "when you really get past that basic set of information, what people really want to know is what life is going to be like. That might be a component of what is missing."
Patient Advocacy
For example, Cohan said, patients want to know whether they'll be able to continue to participate in activities they are already engaged in, such as swimming or horseback riding.
Donna Cryer said she believes shared decision making is key because many surgical candidates are young and their choices will impact their relationships and quality of life. She is a patient advocate and board member of the Society for Participatory Medicine. Twenty years ago, she opted for the IPAA procedure and now says she wishes she had received more information about the impact of the surgery on her fertility.
Shared decision making is more of a priority than it has been in the past, but it is not yet widespread, she said. "The information or tools you get vary very widely based on your institution. And for the most part, from my personal experience, they are focusing on clinical issues and not as much on some of the psycho-social issues and some of the long-term effects."
The situation is the same for the entire field of shared decision making, not just treatment for ulcerative colitis, Cryer said.
'An Evolving Art'
Michael F. McGee, MD, a surgeon at Northwestern University, is working on the development of a tool to improve the relationship between patients and clinicians. When there was a choice of procedures in the past, he said, the surgeon made the decisions. That has changed.
"Patients are coming in with a lot of information and a lot more questions," he said. "Now it's a didactic; it's a two-way street." Surgeons, however, are beginning to realize that patients are playing a bigger role in the decision-making process, McGee said. "It's a fluid situation. I think it's an evolving art."
In terms of supplying surgical patients with the information they need, McGee said, "Right now, we are missing the mark." While decision aides exist for some operations, the majority of procedures are not captured, he says.
He acknowledges that for the GI procedure in the study, the choice of surgeries can have a major impact on quality of life. But bringing patients into the decision-making process also has clinical implications. Data suggests that engaged patients have better outcomes.
For example, patients who understand the implications of hip replacement surgery will be less likely to do something that would cause them to dislocate a hip and end up in the emergency room, he said: "Patients who are informed just do better."
Based on the results of Cohan's study, she concluded that patients want to be informed. "Ulcerative colitis patients are highly motivated and they want to learn about the surgical options and be involved in the decision-making process," she said. "That was kind of unequivocal in the study."