Childhood Cancer

By PATRICIA DONOVAN
News Services Editor

The team worked for more than 2 1/2 years to develop a lively CD ROM-based program, portions of which eventually will be available on the Internet.

The program provides colorful, clearly written, accurate and easily accessible information on the diagnosis, staging, treatment and prognosis for the many forms of childhood cancer, and encourages conversation among childhood cancer patients, their friends and families about their experiences.

Computer work stations where the program can be used are being installed in Roswell Park's teen lounge, parents' lounge and outpatient clinic. Funding has been from a number of sources, including the Goldome, Statler and Josephine Goodyear foundations, Fleet Bank, and Niagara Frontier Automobile Dealers Association.

Michael A. Zevon, associate research professor who is chair of the Psychology Department at Roswell Park, and James P. Donnelly, assistant research professor, will soon begin formal evaluation of the program.

If anecdotal response from children with cancer who have used it is an indication, Zevon said, the new computer-based program measures up well with other methods used to convey information about childhood cancer.

Anumber of the pediatric cancer patients involved in the early testing of the program, he said, have gone on to work on the project. "We're hopeful that the associated learning that takes place will facilitate emotional adjustment among the many people affected by the treatment of cancer in even one child," he added.

Conceived by Zevon and coordinated by Donnelly, the project was designed by students in the UB departments of computer art and media study and is being coordinated by UB graduate assistant Robin Sullivan, a candidate for a master of arts in the humanities degree in art and education. Sullivan's position is funded under a partnership agreement between the UB Faculty of Arts and Letters and Roswell Park.

Evaluations of the program's effectiveness will be conducted by Zevon and Donnelly, with the assistance of graduate students in the UB Department of Psychology and the Department of Counseling and Educational Psychology in the UB Graduate School of Education.

"The diagnosis of childhood cancer represents a crisis for the patient and family," Zevon said. "During this time, they have to quickly absorb an enormous amount of complex information so that the appropriate treatment can begin. This learning must take place in what is obviously a highly emotional context, a consideration that works against the efficient exchange of information.

Zevon said that the new program addresses three audiences: the pediatric patient, the family and the patient's peers and schoolmates.

"The patient module," he explained, "will be keyed to the age of the child and present material in a developmentally appropriate manner. When a child signs on, for instance, she will give her age and the program will automatically access the appropriate information. The family module will target the patient's parents and siblings and the peer/schoolmate module will attempt to facilitate the patient's post-treatment adjustment and school re-entry."

Zevon added: "Our goal here was to develop a one-on-one p.c.-based intervention that would communicate necessary information to all three of these groups. At the same time, we want the program to help users to 'work through' or process information in a way that will result in effective information exchange and enhanced emotional adjustment to the medical situation."

Zevon said the program offers a great deal of clinical information, plus games and Quick-time movies, personal narratives, patients' art work and music composed by them-items intended to reduce stress, lessen feelings of isolation and anxiety and help entertain kids who are sometimes in the hospital for a long time.

It includes a gallery with art programs to which a child can log on, to describe his or her experiences and share them with others. They also can post photos, poems, recipes and essays.

"They are able to express their feelings through various media and make them available to share with others," Zevon said.

He noted that it is particularly important to provide information to a patient's peers and classmates.

"When a child is diagnosed, we will be able to contact the school and explain the program. Then we can take the CD ROM to the school and present it to the child's classmates.

"It's very experiential," he said. "For instance, the classmates of a child undergoing chemotherapy can experience virtual baldness. One of our programs under development can morph users so classmates can see how they'd look if they were bald and perhaps understand a bit more about how the patient feels.

"We can leave CD ROMs with the school module in them with the teacher," he said, "so that students can use the program privately. Our hypothesis is that the use of the program will facilitate the re-entry of the patient into the classroom in a more adaptive way."