NEWS

Post-Traumatic Stress Disorder in Childhood Cancer Survivors: How Common Is It?

Renee Twombly

Several past studies on the psychological impact of childhood cancer have focused on the people around the patient, such as the parents and siblings, or on children during and immediately following their cancers. But what happens to those children when they grow up?

Anne Kazak, Ph.D., professor and director of psychology research at the University of Pennsylvania and director of the Department of Psychology at the Children’s Hospital of Philadelphia, has led a decade-long effort to understand the mental toll of childhood cancer.



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Dr. Anne Kazak

 
Kazak is now leading a randomized study, funded by the National Cancer Institute, to determine whether intervention with use of cognitive behavioral therapy and family therapy can help cancer survivors and their families. She will also develop an intervention program with support from the Lance Armstrong Foundation.

Most recently, her group found that many childhood cancer survivors exhibit signs of post-traumatic stress disorder (PTSD) when they reach young adulthood. PTSD, the malady most famous for lingering, hidden emotional reactions to war in shell-shocked veterans, is now recognized as a syndrome in patients whose feelings about their disease are not resolved. Patients may just want to get on with their lives, but these emotions, often unrecognized, do not always vanish; they can grow stronger and erupt unexpectedly.

Post-Traumatic Stress

Kazak’s latest study revealed that 20% of 78 young adults who survived cancer met the full clinical diagnosis of PTSD. Of the remaining patients, 45% to 90% exhibited at least one symptom of PTSD, depending on the type of criteria used.

Many of those symptoms included overwhelming bursts of anxiety and avoidance related to their cancer experience. "The patients worried that their lives remained in danger and events associated with treatment, such as returning to the hospital, or even smells associated with hospitals, are potent reminders strong enough to generate strong physical and emotional responses years, even decades, later," said Wendy Hobbie, one of the study’s authors.

The rate of PTSD symptoms in these adults, aged 19–40, was four times higher than in a group of cancer survivors aged 9–17 who were studied earlier. The younger survivors’ sense of mortality was not as fully developed. The emotional price to pay for surviving cancer seems to coincide with the normal increased stress of young adulthood, when people are setting out on careers and spouses and children, said Hobbie. "They reach a point where, developmentally, they realize cancer has a far-reaching impact. At 16, you don’t care if you had it. At 30, when you meet the love of your life, you do."

This most recent study is just one of a series led by Kazak, in collaboration with a team of researchers that includes Margaret Stuber, M.D., of the Neuropsychiatric Institute at the University of California at Los Angeles. Kazak’s ultimate goal is to design intervention strategies that can help patients, parents, and siblings to recognize PTSD symptoms and treat them effectively.

Kazak and Stuber were the first to find an association between ongoing difficulties, concerns, and anxieties in former leukemia patients and trauma seen in PTSD. They also found, among other discoveries, that mothers of pediatric cancer survivors have significant symptoms of PTSD—much higher rates than PTSD seen in their children, who were only several years past treatment. Their studies revealed a pattern of increasing PTSD as patients aged, but unremitting widespread symptoms of trauma in their parents.

More Survivors

More and more adults are survivors of childhood cancer; it is estimated that by 2010 one in every 250 to 400 adults between the ages of 21 and 44 will be a survivor of childhood or adolescent cancer. But, mostly, the research accurately reflects what has been seen in cancer treatment. Just as many patients experience physical penalties from their initial cancer cure, they also exhibit psychological consequences. "We believe this isn’t something brand new in the 1990s," said Stuber. "It’s just that no one had asked the right questions before. The advice that had often been given—that patients should go out and celebrate their survivorship and pretend nothing ever happened to them—was not good."

University of Pennsylvania pediatric oncologist Anna Meadows, M.D., said that she is concerned that adult cancer survivors receive even less psychosocial support than children, and that includes childhood cancer survivors as they age and move into general medical care. She also worries that in the future, as now, money will not be available to implement intervention programs for any of these patients or for the parents, who can be the most traumatized. "Mental health efforts just do not get reimbursed for the effort expended," she said. "There is more to a cure than just being alive, and it’s time the funders recognize that."



             
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