The treatment of childhood cancers represents a truly dramatic medical victory. Twenty years ago, more than half the youngsters diagnosed with some form of the disease died within five years of treatment. Today, 70 percent live well beyond that point and many are considered "cured."
What these statistics do not reveal, however, is that about half the young people who survive cancer are at risk of developing problems in such areas as attention and concentration--a direct result of both the disease and its treatments. The effects are both subtle and pervasive, and can affect every area of their lives, including academic performance, family and peer relationships, and job performance, psychologists involved say.
"It's great that our child is cured," the parents of a troubled young cancer survivor recently told psychologist Tony Meyer, PsyD, assistant director for quality-of-life research in pediatric neuro-oncology at the Dana-Farber Cancer Institute in Boston. "But now the question is, how can he find a life that is worth living?"
That question drives psychologists who specialize in childhood cancer--about 100 across the nation who work in the country's major cancer centers. In several large-scale projects and many smaller ones, they are examining ways to help these young people have a better quality of life. The new emphasis demonstrates a radical shift from 20 years ago, when psychologists in oncology worked mainly to find ways to alleviate children's pain and to help families confront the reality of death.
The scourge of 'late effects'
Today, psychologists are addressing two main areas--psychosocial concerns and neurocognitive "late effects"--to help young survivors live fuller lives, says Daniel Armstrong, PhD, a longtime pediatric cancer researcher and director of the Mailman Center for Child Development at the University of Miami.
Psychosocial concerns, such as peer bonding and social skills, face young cancer survivors returning to school. "We're looking at ways to really and truly integrate them back into the classroom over the long haul," Armstrong says. Some survivors also experience neurocognitive late effects--changes in the brain's structure and development that don't appear until well after treatment, but subtly impair functioning. A typical example is a child who had been keeping pace with her peers on simple math problems, but who suddenly has trouble learning a new skill like multiplication.
In simple terms, what happens is this: The disease, the treatment or both cause damage to the brain's support cells, nerves and blood vessels. In turn, the damage slows the brain's ability to process or exchange information, making it difficult for the child to make the holistic connections required for new developmental stages to take place, those involved say.
"Some kids are smart enough to compensate for these changes in other ways for a while, but eventually the problems catch up to them," says psychologist Ray Mulhern, PhD, head of the division of behavioral medicine at St. Jude Children's Research Hospital in Memphis and, in the 1980s, one of the first to demonstrate empirically that cancer treatments themselves can cause brain impairments. "That's one reason why you see a delay in the appearance of academic failure in these kids."
By giving youngsters standardized assessments of intellectual and academic development after diagnosis and continuing to assess them regularly after treatment ends, he and others can compare the rate at which various treatments impact the brain, Mulhern notes. Thanks in part to psychologists' input, he adds, medical researchers continue to find ways to reduce the ill effects of treatments, including both radiation and chemotherapy.
A three-discipline approach
Psychologist Robert Butler, PhD, a pediatric oncology researcher at the Oregon Health Sciences University, is leading a major study that is working to ensure these young people do not fall through the cracks. He, Donna Copland, PhD, and colleagues at six other sites are testing an intensive cognitive-remediation intervention with 168 childhood cancer survivors to see if it improves their attention, concentration, learning and academic skills. The three-year study is funded by the National Cancer Institute (NCI).
"The goal is to help the kids become effective coaches for themselves instead of their own worst enemies," says Butler, who developed the approach used in the study. "By the time a lot of them get to us, they don't like school, they don't like homework, so they avoid all these things."
The intervention uses strategies from three disciplines: brain injury rehabilitation, special education and educational psychology, and clinical psychology. Two-thirds of the youngsters receive the intervention and one-third get on a waiting list. Intervention children meet with a therapist for two hours a week for a total of 40 hours. During that time, they engage in activities that exercise their attention and concentration, prepare them to do difficult activities and teach them how to resist distraction. The team also works with parents and teachers.
Now in its final year, the study shows promising preliminary results. "We think it helps at least a significant proportion of the kids," Butler says. "We are very optimistic." Lead investigator Mulhern is also adding a medical piece by using functional neuroimaging to assess any brain changes that might occur during the intervention.
In a related five-year study, also funded by NCI, Mulhern and colleagues Ronald Brown, PhD, of the Medical University of South Carolina, and Melanie Bonner, PhD, of Duke University Medical Center, are testing whether the attention-enhancing drug Ritalin can help children with the same kinds of problems that Butler is seeing. Using a randomized double-blind placebo controlled design, the team has tested more than 70 young cancer survivors who have received the drug. The study, now in its fourth year, is going well, says Mulhern: Many of the youngsters said they benefited from an initial three-week trial to test the effects of the drug, and most have stayed on the medication. The team reported changes in attentional functioning in the children following a single dose of the medication in a 2001 article in the Journal of Clinical Oncology (Vol. 19, No. 6).
While he was aware the study might spark controversy because of Ritalin's reputation for overprescription, the fact that most families agreed to participate "points to the fact that parents are really in tune with quality-of-life issues for their kids," Mulhern says. "The ability for them to graduate from high school, to get a decent job and to live independently--those are clearly things that are on their parents' minds."
In another five-year study launched in January, Armstrong's team at the University of Miami is working in schools to test an intervention designed to optimize cancer survivors' learning. The intervention, a tailored individual education plan, uses voice-recognition software and other accommodations to address learning problems experienced by the youngsters.
Quality of life
Other psychologists are using their particular brands of expertise to help children and young adult cancer survivors re-engage with life. Their projects include:
A multicenter study of brain tumor survivors. Meyer of Dana-Farber and psychologists at several other sites are poised to conduct one of the largest studies to date on quality-of-life factors in 250 survivors of childhood brain tumors. They face the challenge of huge variation in the type and location of the tumor, the length and type of treatment, and the health of the child at the time of treatment, Meyer says.
"It would be ideal to provide each survivor of a childhood brain tumor with individually tailored psychosocial care, but unfortunately the health-care system can't always provide that," Meyer says. "This study is a realistic step toward identifying and addressing this population's psychosocial needs, given the limited mental health resources in most hospital systems." The project is awaiting approval from the National Institutes of Health.
Two trauma-related studies. Anne Kazak, PhD, director of psychology at The Children's Hospital of Philadelphia, is conducting two studies that build on her previous finding that families of children with cancer, particularly parents, are at higher risk for developing symptoms of post-traumatic stress than controls. Both studies, funded by NCI, are unique in combining cognitive-behavioral and family-therapy approaches for this population, Kazak says.
The interventions are designed to aid the entire family, Kazak notes: "If parents are experiencing post-traumatic symptoms such as intrusive thoughts, avoidance and arousal, it will have an impact on how survivors and other children in the family grow up," she says.
The first study is testing the effectiveness of a one-day intervention program for young cancer survivors and their families in reducing post-traumatic stress symptoms. It brings families into the hospital for a day, and includes four sessions of cognitive-behavioral exercises as well as family discussion groups to help families cope and communicate better when they return home. The study is nearing completion and the results look hopeful, Kazak says. The second study, about to begin, will target families of children who are newly diagnosed with cancer to see if the intervention can help prevent the development of the trauma-related symptoms.
Development of a new screening instrument. Christopher Recklitis, PhD, chief psychologist at the David B. Perini Jr. Quality of Life Clinic at Dana-Farber, is developing a standardized screening instrument that can tap psychological distress in childhood cancer survivors who are five years or more off treatment.
It's a needed tool, he says, because about 30 percent of these young people show significant levels of distress, including depression, suicidal ideation and suicide attempts. He is now using a three-year grant from the Lance Armstrong Foundation to develop an instrument that can quickly screen out those who don't have problems and focus on those who do.
Two smoking-intervention studies. Psychologist Vida L. Tyc, PhD, of St. Jude in Memphis, is conducting two studies to help reduce the incidence of smoke-related complications in young survivors. "Smoking is an important focus because it magnifies the health risks for kids who have been treated for cancer," she notes.
The first study, in press at the Journal of Clinical Oncology, shows that, compared with a control intervention, an educational intervention lowers young survivors' intention to smoke. While teenage cancer survivors are less likely to smoke than the average adolescent, they are at greater risk of developing health problems, Tyc says. As they get older, they also smoke more: About 5 percent to 10 percent of young cancer survivors start smoking before age 18, and then, after 18, the rate climbs to 17 percent.
Tyc's other study, funded by NCI for five years, will work with parents who smoke to reduce the chance they will expose their children undergoing treatment to second-hand smoke. This is a key intervention area, given that about 43 percent of newly diagnosed young cancer patients have parents who smoke, Tyc says.
The enthusiasm for these and other advances in cancer research is evident in a decision made at a recent meeting of the Children's Oncology Group's psychology committee. Its members unanimously agreed to institute a process allowing psychological researchers to quickly combine, blend and compare treatments.
"Our aim," says the University of Miami's Armstrong, "is to get these interventions into the hands of people who are taking care of these children as quickly as possible."
Woznick, L.A., & Goodheart, C.D. (2002). Living with childhood cancer: A practical guide to help families cope. Washington, D.C.: American Psychological Association.