Disfigurement and persistent hair loss from childhood cancer and treatment has been linked to future emotional distress and reduced quality of life for survivors, according to new study results.
Karen Kinahan, RN, MS, PCNS-BC, coordinator of the STAR Survivorship Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University in Chicago, and medical researchers from across the country compared the self-reported scarring, disfigurement and hair loss of 14,358 patients who were treated from 1970 to 1986 with siblings who did not have childhood cancer. Participants were identified from a retrospective cohort funded by the National Cancer Institute.
Fifty percent of the participating survivors were randomly selected and asked to nominate a sibling nearest their age for the comparison group (n=4,023). Participants completed a baseline survey in which they reported on head, neck, arm, leg, chest and abdomen scarring and disfigurement and persistent hair loss as a result of their illnesses and treatments. A follow-up survey focused on psychological outcomes and health behaviors. Psychological distress was assessed using the Brief Symptom Inventory measure. Parents completed surveys if the survivors or siblings were younger than 18 years of age or if the participants with cancer died 5 years after diagnosis but before the survey was administered.
Adjusting for age, sex, race, education, marital status and treatments received, the researchers found that survivor hair loss increased the risk for anxiety (RR=1.60; 95% CI, 1.23-2.07), whereas disfigurement of the head and neck increased the risk for depression (RR=1.19; 95% CI, 1.01-1.41). Limitations due to emotional symptoms were associated with head and neck disfigurement (RR=1.24; 95% CI, 1.10-1.41), arm and leg disfigurement (RR=1.19; 95% CI, 1.05-1.35) and hair loss (RR=1.26; 95% CI, 1.09-1.47).
According to the researchers, survivors reported a significantly higher rate of scarring and disfigurement on the head and neck (25.1% vs. 8.4%), arms and legs (18.2% vs. 10.2%) chest and abdomen (38.1% vs. 9.1%) and hair loss (14% vs. 6.3%), compared with siblings.
“The results show that cancer treatments can affect childhood cancer survivors’ physical appearances and their quality of life long after they turn 18,” Kinahan said in a press release. “I have patients who are asymmetrical because of radiation treatments, others with scars on their faces and necks from biopsies and surgeries and some who’ve had the amputation of a limb.”
Disclosure: The researchers report no relevant financial disclosures.