Portland, Ore.

Cognitive remediation is one of the first federally sponsored studies of its kind

For children with cancer, medical advances are steadily increasing the odds of survival. Today more than 80 percent of children who have acute lymphoblastic leukemia (ALL) -- the most common form of childhood cancer -- survive. While, the five-year survival rate for children with brain tumors is about 60 percent. But for some, survival may come at a price: lifelong learning difficulties that hurt school performance and self-esteem and may even lead to such problems as chronic unemployment. Difficulties can include problems with basic thinking skills, memory loss and attention deficit.

17-year-old Adam Johnson of Gresham, Ore., survived ALL when he was only 3 years old, but the radiation treatment he underwent may have caused long-term problems in his development. In grade school, his mom, Karen Johnson, would spend hours trying to help him keep up with his schoolwork. While in middle school, he wasn't motivated at all. "I was always dozing off, not paying attention," said Adam.

"I struggled with him for many years. He just didn't get the basic skills he needed to learn," said Karen. She added it's a relief to know there may be a cause for Adam's learning deficits.

Adam is part of a multi-center study based at Oregon Health & Science University's Doernbecher Children's Hospital that may offer hope of a more normal life for children who survive cancer. The study is being funded by a $2.4 million grant from the National Cancer Institute, a component of the National Institutes of Health (NIH). Robert W. Butler, Ph.D., clinical psychologist at Doernbecher and associate professor of pediatrics (pediatric hematology/oncology), OHSU School of Medicine is leading this research which has special significance as one of the first federally sponsored programs directed toward improving brain activity deficits resulting from cancer treatment. The program is known as cognitive remediation. The research will examine the effectiveness of a unique treatment involving brain exercises, learning strategies and cognitive-behavioral therapy.

"Supporting research studies that may lead to the prevention or control of adverse sequela of cancer diagnosis and treatment, and help cancer survivors cope with these possible side effects is one of our key missions," said Noreen Aziz, M.D, Ph.D., M.P.H., program director of NCI's Office of Cancer Survivorship. Butler's research grant is being funded by, and will be coordinated and monitored for scientific progress by, the Office of Cancer Survivorship. The fundamental mission of this office is to support and conduct research to enhance the quality and length of survival of all persons diagnosed with cancer.

Butler's work with 11-year-old Andrew Sumpter of West Linn, Ore., helped him develop the study's protocols. Andrew survived acute lymphoblastic leukemia (ALL) at age 4, thanks in part to radiation treatment to his brain. But the side effects were learning difficulties. Andrew's mom, Sue, noticed that he was having trouble remembering things, paying attention and his writing had deteriorated. Before cancer treatment, Andrew could write his name legibly and drew wonderful pictures. Sue read about Butler in a local cancer support group newsletter when he was doing his research in New York. She even considered traveling across country so he could work with Andrew. But fortunately, fate brought Butler to the Sumpters.

Andrew received therapy to help him regain some attention and concentration skills while receiving radiation treatment. The therapy included exercises that strengthened his memory, thinking processes and ability to stay focused. Sue said as a result of both his physical and psychological therapies, Andrew now is cancer-free and a successful fifth-grader. "Because his learning disability was recognized early and he has had intervention since age 5, he's reading now, and his writing has improved," said Sue. "It's amazing how he's progressed."

Learning difficulties often occur in children treated for the most common childhood cancers: leukemia and brain tumors. Patients usually receive radiation treatment, chemotherapy or both to the central nervous system to kill the cancerous cells. Although these treatments save lives, they sometimes impair activities of the brain, such as thinking, attention, memory, speech and flexible thought. Radiation treatment to the brain is more likely to cause the impairment than chemotherapy.

"Now that many children are surviving cancer," Butler said, "pediatric psychologists must take a major role in designing effective rehabilitation programs." In 1990 Butler began working on the problem at Memorial Sloan-Kettering Cancer Center in New York where he received much support for his research. Butler said at that time, "rehabilitation for deficits caused by treatment for childhood cancer was an idea many people at other institutions weren't ready to accept." His early research was funded privately by the Carol Solov Abbani Foundation in New York.

Butler has directed three earlier pilot studies testing the therapy on 33 children. Those studies eventually demonstrated that cognitive remediation may improve attention and concentration skills in most patients. "We don't get rid of all the problems, but we do appear to help," Butler said, "and some kids have been brought pretty close to normal functioning." As part of the current study, 168 children ages 6 to 17 will be enrolled during the next three years. Participants will undergo 20, two-hour, individualized treatment sessions during a four-to six-month period. The sessions will include exercises and the teaching of new strategies to improve the child's ability to retain information, stay focused and concentrate on problem solving through self-talk. A study therapist monitors the children while they use computer activities, audiotapes and mainstream board games as some of their teaching tools. Nationally, 52 children currently are enrolled in the study.

"I used to think, I can't wait until Andrew's cancer treatment is finished and we can get back to normal," Sue said. "Well, things are never going to be normal again. But this treatment has given so much to our family -- and to others." She now advocates for schools to improve the learning environment for childhood cancer survivors. Her local school district, West Linn-Wilsonville, is the first big success. They've started a special class that offers students like Andrew, who have suffered brain injuries or other disabilities, the opportunity to learn in a smaller class environment from special education teachers.

The results of this study eventually may help other populations of brain-damaged children and young adults, such as patients who have suffered a traumatic brain injury, Butler said, although this will require further investigation.

Co-principal investigator on the study is Donna Copeland, Ph.D., Department of Pediatrics, University of Texas, M.D. Anderson Cancer Center, Houston, Texas. Other institutions involved are the Children's Hospital of Philadelphia; University of Rochester; Children's Hospital Los Angeles; St. Jude Children's Research Hospital, Memphis; Children's Hospital Medical Center, Cincinnati; and the AMC Cancer Research Center, Denver.

DOERNBECHER COGNITIVE REMEDIATION STUDY FACT SHEET

PURPOSE

• The study looks at the effectiveness of using cognitive remediation that includes mind exercises and learning strategies to correct attention and concentration deficits in childhood cancer survivors.

FUNDING

• A $2.4 million grant from the National Cancer Institute, a component of the National Institutes of Health, will fund the multi-center study based at Oregon Health & Science University's Doernbecher Children's Hospital.

STUDY PARTICIPANTS

• A total of 168 children ages 6 to 17 will be enrolled during the three-year study period. The study started in August 2000.
     
• Participants will undergo 20, two-hour, individualized treatment sessions during a four- to six-month period.
     
• Nationally, 52 children are currently enrolled in the study.

RESEARCHERS

• Principal investigators are Robert W. Butler, Ph.D., clinical psychologist at Doernbecher and associate professor of pediatrics (pediatric hematology/oncology) OHSU School of Medicine; and Donna R. Copeland, Ph.D., professor of pediatrics at the University of Texas Medical School, M.D. Anderson Cancer Center.
     
• Other institutions involved are the Children's Hospital of Philadelphia; University of Rochester; Children's Hospital Los Angeles; St. Jude Children's Research Hospital, Memphis; Children's Hospital Medical Center, Cincinnati; and the AMC Cancer Research Center, Denver.

OTHER CHILDHOOD CANCER STATISTICS

• Today more than 80 percent of children who have acute lymphoblastic leukemia (ALL) -- the most common form of childhood cancer -- survive. While the five - year survival rate for children with brain tumors is about 60 percent.
     
• Every year more than 11,000 children and teenagers are diagnosed with cancer, according to the National Childhood Cancer Foundation.

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