NIAGARA-ON-THE-LAKE, Ontario, Canada--There has been little research into the long-term psychosocial effects of surviving childhood cancer. As the numbers of survivors grow, it has become apparent that this population has increased anxiety and concerns, and that a model to understand these effects is needed, Wendy Hobbie, RN, said at the 5th International Conference for Long-Term Complications of Treatment of Children and Adolescents for Cancer, hosted by Roswell Park Cancer Institute.
"We began to notice that our adult survivors had concerns regarding their emotional well-being," said Ms. Hobbie, of The Childrens Hospital of Philadelphia. "These survivors reported that they had revisited past events where they remembered early cancer treatments. They expressed increased anxiety about their welfare and the welfare of their offspring."
Ms. Hobbie and her colleagues searched the literature for a model to help them understand the psychosocial effects of surviving cancer and found that post-traumatic stress disorder (PTSD) most closely matched what they were seeing in survivors. Symptoms of PTSD include re-experiencing negative situations, avoidance, numbing, significant stress, and impairment of everyday function. Although originally proposed as a post-war syndrome, in 1994, the definition was expanded to include any situation that is life-threatening to a person or his or her offspring. Cancer fits that criteria in that it involves repeated invasive procedures, a serious life threat, and disruption to a family.
To explore this phenomenon, Ms. Hobbie and her colleagues used two tests to assess symptoms in a group of young adult survivors of childhood cancer--the PTSD Reaction Index and the Impact of Events Scale (IES).
There were 78 participants, ranging in age from 18 to 40 years (mean, 25.2). All were more than 5 years from their cancer diagnosis and more than 2 years post-therapy. The mean age at diagnosis was 11.7. The sample was divided equally between males and females, with 57% Caucasian, 32% Hispanic, 4% African- American, and 4% Asian.
The scores from this young adult study were compared with those from studies by Drs. Anne Kazak and Margaret Stuber who evaluated child and adolescent cancer survivors and their families for PTSD using the same battery of tests (Table).
"These data show that the young adults had much greater anxiety levels with higher levels of avoidance behavior and intrusive thought than their younger counterparts," Ms. Hobbie said. "In fact, 20% of young adult survivors met the full criteria for PTSD vs only 5% of children."
Currently, the researchers are conducting a larger randomized study exploring this issue. In addition, Ms. Hobbie said, "we have an intervention program for patients and their families. We help them reframe the cancer experience to reduce their anxiety levels and symptoms of PTSD. Our plan is to modify this program for young adult survivors."