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
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."