Numerous studies have been done with both child and adult survivors of cancer that demonstrate that the psychological effects of the disease can last well beyond the clinical symptoms. Researchers from Northwestern University have published a new study in the Journal of Clinical Oncology (JCO) that examines this long-lasting effect in children in what the researchers describe as “the largest study of its kind.”
The researchers, who were led by an advanced practice nurse at Northwestern University in Chicago, IL, compared reports of scarring, disfigurement and persistent hair loss from adult survivors of childhood cancer to their siblings, who were not childhood cancer survivors. According to the abstract in the JCO, survivors reported “a significantly higher rate of scarring/disfigurement compared with siblings for head/neck (25.1% v 8.4%), arms/legs (18.2% v 10.2%), and chest/abdomen (38.1% v 9.1%), as well as hair loss (14.0% v 6.3%).”
The study controlled for cranial radiation, as the procedure has been linked to psychological distress in the past, with results of the controlled analysis showing that “age, sex, race, education, and marital status, survivor hair loss increased risk of anxiety (RR, 1.60; 95% CI, 1.23 to 2.07), whereas head/neck disfigurement increased risk of depression (RR, 1.19; 95% CI, 1.01 to 1.41).”
Karen Kinahan, RN, APN, P-CNS, who led the study, and colleagues used data from the Childhood Cancer Survivor Study (CCSS), providing more than 14,000 CCSS participants with two surveys, administered at baseline in 1992 and then again in 2003. More than 4,000 siblings also participated.
The survivors, all of whom were treated between 1970 and 1986, filled out self-reported questionnaires about head/neck, arm/leg and chest/abdomen scarring, disfigurement and persistent hair loss. Psychological distress and quality of life data were taken from the 2003 survey; distress was evaluated using an 18-item measure that was based on self-reports of symptoms over the prior 7 days, and quality of life was evaluated using a 36-item self-reported measure of general health over the prior 4 weeks.
“The results of this study help illustrate the complex chain of events childhood cancer can have on quality of life as an adult,” says senior author Kevin Krull, PhD, an associate member in the departments of epidemiology and cancer control and psychology at St. Jude Children’s Research Hospital. “We have long been aware that radiation therapy is associated with increased risk for emotional distress and social problems, though we did not fully understand the process this involves. The current study begins to map this process.”
