BUFFALO, NY--While most long-term survivors of childhood cancer suffer few psychological scars, up to 30% of fathers and 40% of mothers may exhibit moderate to severe symptoms of post-traumatic stress (PTS)--a disorder commonly associated with war veterans and victims of violent crime.
Although groundbreaking studies of the 1980s and early 1990s provide compelling evidence that childhood cancer survivors generally do well psychologically, "we had an unsettled feeling that we weren't getting the whole story," said Anne E. Kazak, PhD, director of Psycho-social Services in the Division of Oncology at the Children's Hospital of Philadelphia.
In her presentation at the 4th International Conference on Long-Term Complications of Treatment of Children and Adolescents for Cancer, Dr. Kazak described her study comparing PTS symptoms in 130 leukemia patients, ages 8 through 19, who were at least 1 year off treatment, and their parents, with symptoms in a group of 155 healthy, same-age children and their parents.
"To our knowledge, this is the first effort of its kind to include a comparison group," Dr. Kazak said.
Survivors and their parents responded to questions based on the child's cancer and its treatment. The comparison families were asked to name one significant life stressor that affected the child, and refer only to this event when responding. Reported stressors ranged from starting a new school to the death of a parent.
Young Age May Be Protective
PTS and anxiety questions targeted intrusive memories, reliving the event, avoidance, numbing, increased arousal, feelings of fear, helplessness or horror, and significant distress and impairment.
Contrary to expectations, the cancer survivors did not differ from the comparison group in self-reported PTS symptoms, a finding attributed to the young age of the patients at diagnosis (mean age, 4.8 years) and their difficulty in recalling treatment. "Perhaps the limited ability of preschool and school age children to process cognitively the life threat of the cancer serves to protect them against the full impact of the trauma," she said
The parent data painted a far different picture, Dr. Kazak said, "indicating that the psychological reactions to diagnosis and treatment often continue in a chronic, subdiagnostic course of intrusive memories and flashbacks."
The level of PTS symptoms reported by mothers of survivors placed 10.2% of them in the severe range, significantly higher than the 2.8% of mothers of healthy children. Scoring in the moderate range were 30% of survivor mothers and 19.6% of comparison mothers.
Nearly 10% of survivor fathers, but none of the comparison fathers, scored in the severe range, while 21.4% of survivor fathers and 13% of comparison fathers scored in the moderate range.
Fears and Memories
When asked questions about specific experiences with PTS symptoms, both mothers and fathers reported interference with daily living. "Fears resurface and memories return in response to common childhood occurrences such as the common cold, aches, and pains," Dr. Kazak said.
The most vivid, recurring memories are those linked to initial diagnosis, medical procedures, and the deaths of other young cancer patients. Yet despite this interference with daily living, parents and their families showed no significant functional impediments. In fact, compared with other stressed and traumatized groups, such as war veterans, parents' PTS scores were significantly lower, indicating better adjustment, adaptation, and coping.
"These parents continue to shape their children's experiences and the overall functioning of the family," she said. "The long-term implications for children whose parents are experiencing PTS syndromes are potentially powerful and clearly warrant further investigation."
Dr. Kazak also encourages future research that would broaden the age range of long-term survivors to include those diagnosed in adolescence and young adulthood.
Evaluate Patients and Parents
Survivors and their families who are "cured but not connecting" need support to reduce their sense of isolation and normalize ongoing psychological reactions, Dr. Kazak said. She suggests that parents should be assessed more systematically, perhaps during their child's routine exams or check-ups.
"We also need to evaluate patients themselves, particularly in terms of development and memory issues, and focus on designing psychological interventions during and at the end of treatment that prevent PTS symptoms from occurring," she said.