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Many childhood cancer survivors experience attention problems. St. Jude is making progress in fighting these late effects of their disease and treatment.
High school freshman Catherine Gensler remembers a time when paying attention in class was nearly impossible. Thoughts fleeted across her mind and faded just as quickly. Before long, Catherine’s parents, Lawrence and Missy, pulled her out of the classroom and opted to home school their struggling daughter.
Catherine had not always struggled so mightily. At age 7, she was found to have a primitive neuroectodermal tumor (PNET), a rare brain tumor that is usually found in children younger than 10 years old. After undergoing nine months of radiation, high-dose chemotherapy and four stem cell transplants at St. Jude Children’s Research Hospital, Catherine’s tumor went into remission. Not long afterward, the first signs of attention problems surfaced.
“I was thinking about other things all the time when I was in class,” says Catherine, now 15. “My mind was elsewhere.”
Catherine’s troubles were not unlike those suffered by other young survivors of brain tumors and acute lymphoblastic leukemia (ALL). Among childhood cancer survivors, these two groups most typically experience cognitive late effects as a combined result of their disease and targeted treatment.
Investigators at St. Jude have spent a decade examining the best options for helping childhood cancer survivors overcome cognitive deficits. The institution spearheaded a recently completed multicenter trial, which revealed that methylphenidate, a medicine widely used to treat attention-deficit/hyperactivity disorder (ADHD), also provides long-term relief from the attention and behavior changes that affect many childhood cancer survivors.
“We found that methylphenidate improves both attention and social skills and that these benefits are maintained,” says the study’s first author, Heather Conklin, PhD, of the St. Jude Department of Psychology.
When the Genslers received a letter from St. Jude asking for Catherine to participate in the trial, they jumped at the chance. According to Conklin, childhood cancer survivors such as Catherine who took part in the study were experiencing three main problems: inattention and distractibility; difficulty with executive functions such as planning, organizing and strategizing; and a reduced efficiency in completing tasks. As time goes on, the academic achievement gap widens between these students and their peers, causing self-esteem problems as well.
Although methylphenidate has been used successfully for decades to treat ADHD in healthy children, Conklin says that did not ensure the drug would benefit children whose symptoms followed a cancer diagnosis. Children who had ADHD before their cancer was discovered were excluded from the study. The yearlong trial consisted of two groups—a control group of 31 brain tumor and 23 ALL survivors who did not receive methylphenidate and the experimental group of 35 brain tumor and 33 ALL survivors who received the drug.
The group that was given methylphenidate scored better on tests of sustained attention at the end of the trial. Parents, teachers and the survivors also noted that their attention levels appeared to improve. In addition, parental ratings of social skills and behavior problems also showed a benefit. In the control group, only parental ratings of attention and social skills improved during the same period. Neither teacher, self-report nor computerized tests indicated changes in attention for this group.
“We believe this may indicate that parents acclimate to their child’s deficits over time, whereas teachers have other classmates as a benchmark for change,” Conklin explains.
Although the drug did not lead to a significant gain in measured academic skills, many parents reported that their children’s grades improved because the children did a better job of managing tasks like planning ahead for projects or remembering to complete and turn in assignments.
“She is now so self-motivated,” Missy says of Catherine. “This medicine has made such a difference in her life because she is able to succeed in school. It has given her so much confidence.”
Catherine, who continued taking the drug after the trial was finished, recently made her school’s honor roll. She takes a dose each morning on weekdays and on weekends when she needs to complete a big assignment.
“I see a huge difference now,” Catherine says. “I can actually concentrate on what I’m doing and what the subject is. I’m not everywhere in my mind.”
While the use of methylphenidate is a viable option to consider, Conklin says that the pursuit of other approaches to treating cognitive late effects is still important.
“We are moving forward with research into new strategies to benefit more survivors and their families,” says Conklin.
In addition to conducting research, Conklin also sees cancer survivors in clinic once a week.
“I do discuss methylphenidate as one of the options for a child when we find that attention problems are an area of difficulty,” she says, “but we are also working with schools to educate teachers about cognitive late effects, what they look like and strategies they might be able to use.”
Reprinted from Promise Winter 2011