When a man is first diagnosed with prostate cancer, the initial visit to the doctor becomes a blur. Complex decisions about treatment now face the patient, yet formulating adequate questions is often difficult. Further clouding the picture is the tendency of some physicians to only recommend treatment options in which they specialize.
To empower patients facing these difficult and complex decisions, Temple University's College of Engineering (http://www.eng.temple.edu) and the Fox Chase Cancer Center (http://www.fccc.edu), armed with a joint two-year, $200,000 grant from the National Cancer Institute (http://www.nci.nih.gov), are developing an interactive, computer-based program to provide comprehensive information to men diagnosed with prostate cancer.
The program, called Prostate Interactive Educational System (PIES), will present relevant disease and treatment information that is tailored to the patient's information seeking preference.
The program is being designed by Dr. Brian Butz, professor of electrical and computer engineering at Temple, and Dr. Michael A. Diefenbach, health psychologist and associate member of the division of population science at FCCC.
"There is a need for patient information, particularly with prostate cancer, because the patient has the option of several treatment methods such as surgery, radiation or seed implantation," says Diefenbach. "There are several equivalent treatment options, all of which can potentially have a significant impact on the quality of life of the patient."
The program will use an interactive expert system that was previously developed by Butz for use as a tutorial program for electrical and computer engineering students. That system is presently in beta testing at about a half-dozen colleges and universities.
The PIES program will be modeled as a "virtual" health center consisting of a number of rooms, including a reception area, physician offices, consultation rooms, a library, and a group meeting room.
"It will be very interactive and easy to maneuver," says Butz. "For example, if a patient wants to talk to a physician, he can use the software to talk to a urologist or a radiation oncologist and then ask the physician questions, which the program will answer. They'll be able to go to a virtual library and read about things or find Web sites where they can go and get additional information."
Butz says right now a patient can access information about prostrate cancer via the Internet, "but it's like a big dump truck coming in and unloading all the information on you."
Butz and Diefenbach hope that the program, contained on a CD, will serve as catalyst for patients diagnosed with prostate cancer to formulate questions for their physician and will help them make an informed decision on possible treatments.
"The patient has a lot of clinical, as well as psychological, factors to consider before making a treatment decision. If the patient is lucky, their doctor will present several treatment options. And he will then turn the decision over to the patient," explains Diefenbach. "A lot of patients are not used to that kind of role. Normally, they go to a physician and they expect the physician will tell them what kind of treatment they should have.
"Right now, a lot of patients seek information from a variety of different sources," he adds. "They go to a Web page, they go to the library, they talk to friends and family. What our program will do is combine a lot of information from various sources and present it in an easy-to-understand, concise manner."
The program will also feature a "virtual" support group, comprised of actual prostate cancer survivors. The patient will be able to ask the support group members about such things as how they coped with their situation, how they made their treatment decision, and how it impacted their lives.
"PIES will allow a patient to seek out and ask," says Butz. "Our program will find out how much a patient wants to know and if they seem like an individual who wants more, it will offer you more."
"One of the novel aspects of our program is that while the patient is going through the program, he will have the opportunity to jot down notes in a virtual notebook," adds Diefenbach. "The program will ask the patient to list his major concerns at the end when he's done. And those concerns are then incorporated into a report."
Two reports will be generated at the completion of the program. One is for the physician who can see what issues concern the patient most and those issues can then be addressed first by the physician.
"We think this structures the interaction between the physician and the patient in a much more efficient way," says Diefenbach. "It would ensure that the patient would receive the information that is important to him."
The second report will summarize the information that the patient has accessed and serve as a reminder for the patient to go back and access other information if he so chooses.
Butz and Diefenbach expect PIES to be available to Fox Chase patients in 2004, and hopes eventually to modify the program to serve breast cancer patients.