Can colored dots help patients make medical decisions?

When Gary Sherman, a senior technician at an insurance company, was diagnosed with Crohn's disease in 2003, his doctor showed him the photographic images taken from his colonoscopy. The doctor pointed with his pencil at the image of the ileum, the end of the intestinal tract that showed evidence of the disease.

To Sherman the picture looked like the inside of a tied-off pink balloon. Without knowing what a healthy ileum looked like, “I looked at it like I was looking at a brick wall,” he said. “Like, what are you showing me here?”

A confused Sherman sought a second opinion to help determine treatment options. Perhaps it would have helped if his doctor could have used the kind of graphic tools researchers are now testing to see whether pictures of squares, colored dots and simple charts can help patients make complicated medical decisions.

It's common for patients who are faced with serious illnesses to feel confused by their treatment options. The gulf between what doctors think they are explaining and what patients understand can be huge.

“We haven't trained doctors to talk to patients in a way that's normal,” said Robert Arnold, director of the Institute for Doctor Patient Communication at the University of Pittsburgh. “Doctors aren't very good at eliciting patients' concerns. They interrupt them very often and move on.”

In fact, a third of families that have had a member die of an illness often later complain that their doctor didn't explain treatments well enough, Arnold said.

For decades medical educators have tried to improve how doctors are trained to speak to patients. Now one researcher is testing out a new possibility. She is developing graphic tools to help doctors give patients clearer information about treatment options and visual clues about the probable success rates of various treatments.

Poor communication between doctor and patient can lead to improper treatment and worse, according to Jessica Ancker, a Ph.D. student in the department of biomedical informatics at Columbia University Medical Center. When bad things happen, patients often say they didn't understand the risks.

Ancker hopes the graphics she's developing may help patients get a clearer picture--literally--of the risks and rewards involved with specific treatments. The graphic Ancker is currently testing--and which faces much more research before it can reach doctors' offices--is called the “100-person diagram.”

This is a picture of one large square box containing 100 smaller boxes. Each small box represents how one person in 100 responded to a given treatment for a disease or condition. By putting colored dots in the correct number of boxes, doctors can show patients how high the probability is that they will benefit from a certain treatment.

Ancker believes the diagrams can help patients with serious illnesses like breast cancer choose the treatment options that are right for them. For example, a woman diagnosed with early stages of breast cancer may have a 33 percent chance of recovery after five years with chemotherapy. This would be represented by 33 dots in boxes.

A statistician and former medical writer, Ancker is interested in how patients perceive the various risks associated with treatments. “There's an assumption in our culture that people should be able to make an informed choice,” Ancker said. “But I don't think they really can unless they really understand what those probabilities mean at least at some level.

“When an expert tells a patient, ‘I don't know if you're going to get diabetes, but people with your diet, your weight and your lifestyle have a certain probability of developing diabetes,' at what level do people understand what that means?” Ancker said.

Ancker believes it is easier to re-engineer the information that doctors offer than to expect more from patients. While her work is still in its testing stage here in the United States, doctors in Australia have already incorporated graphic tools into conversations with patients.

Phyllis Butow, a researcher in doctor-patient communication at the University of Sydney, has used the 100-person diagram to help patients understand the potential success of various treatments. Patients often tell her that the graphics can be too harsh, especially when the diagrams show that the prognoses are poor.

But if they have to make difficult decisions--for example, whether the benefits of chemotherapy outweigh the associated side effects--then the clearer graphical information can be useful. A further benefit of using a diagram, Butow says, is that it gives the doctors a framework for discussing risk, a topic doctors sometimes avoid because the risks associated with difficult treatments can be hard for patients to accept.

Butow shows patients a version of the 100-person diagram that uses dots of different colors to suggest how different treatment options compare. The green dots might represent the probability of survival if a cancer patient is given a chemotherapy treatment. The purple dots might represent the probability of survival if the patient chooses surgery. Some of Butow's graphics have up to three different colored dots on the same diagram, so that patients can look at one graphic and be able to see all the probable outcomes of different treatments.

While the medical graphics are being tested in the United States, medical schools continue to work at training doctors to help patients make better decisions about treatments, according to Arnold, director of the Institute for Doctor Patient Communication. Some patients faced with serious illnesses can bring home audio-taped sessions with their specialists to play for loved ones who will help them make decisions. Some doctors may also provide decision-making charts that describe, in words, the effects of various treatments or detailed questionnaires that help patients identify important priorities in treatment.

Doctors-in-training also practice discussing treatment options with actors playing patients. For now, researchers say, doctors should encourage their real patients to ask questions for as long as necessary and as often as necessary until they can make informed treatment choices.

-- Andrea Gawrylewski - Columbia News Service