Computer Program Educates Childhood Cancer Survivors

NIAGARA-ON-THE-LAKE, Ontario, Canada--Survivors of childhood cancer may not be completely aware of their disease, their treatments, and potential late effects of treatment, Cristina M. Checka said at a conference on long-term complications of childhood cancer, hosted by Roswell Park Cancer Institute.

Ms. Checka, who works with Gail Tomlinson, MD, PhD, at the University of Texas Southwestern Medical Center, said that a previous study had shown that more than half of survivors tested could not name a late term effect of their cancer, despite prior exposure to literature about their disease. A new interactive computer tutorial, developed at UT Southwestern, aims to improve those knowledge curves.

An Active Medium

"The computer program has a huge advantage over traditional methods of sharing information with survivors," Ms. Checka said. "It is an active medium that allows users to select the direction in which they want to go. Also, users get immediate feedback, which may encourage them to continue with the program." The limits of this type of learning experience, she noted, include the cost of equipment and the need for space in clinics to accommodate the equipment.

The Texas researchers created the prototype program, known as the ACE (After the Cancer Experience) Navigator, using Hypercard, a Macintosh-based system. The program’s goals are to educate survivors about their childhood cancers, help patients recognize potential survivorship issues, and offer strategies for healthy living.

The ACE Navigator program begins in a doctor’s office, which serves as the home page. Users can select from 12 icons for more information in different areas, including information about their disease, treatment modalities, and late-term effects such as fertility issues and potential risks to offspring.

The Ace Navigator is designed to make use of color, sound, cartoon drawings, and some video areas, such as a display of how a germ is destroyed by a white blood cell. At every step, the user may advance to a new area only after answering a question correctly.

"We believe we can educate adolescents and adults alike with this program," Ms. Checka said. "We want cancer survivors to be familiar with the procedures they had as children and help them stay healthy now. We do not expect this program to be available outside of a clinic setting; it is meant to complement the follow-up care in the hospital."

Ms. Checka said that the program is currently undergoing beta testing. The researchers hope to have a version of the program available within the next 2 years for use in other clinics.