Scarring, disfigurement, and quality of life in long-term survivors of childhood cancer: A report from the Childhood Cancer Survivor Study.

9038 Background: Survivors of childhood cancer are at risk for a host of chronic and often debilitating medical conditions. Less studied and understood late effects are treatment-related scarring, disfigurement and persistent hair loss, and their impact on the survivor's health related quality of life. METHODS The prevalence of bodily scarring and persistent hair loss was examined in 14,358 survivors (63.5% ≥ 20 yrs old; 53.7% male) and 4,023 siblings from the Childhood Cancer Survivor Study cohort. Multivariable models were used to examine associations with demographic and cancer treatment variables. A subset of 7,178 survivors who completed a subsequent survey was used to evaluate the impact of disfigurement and hair loss on quality of life and emotional distress. RESULTS The percentage of self-reported scarring and disfigurement was significantly higher for survivors compared to siblings across all sites (all p-values <0.001) including head/neck (25.1% vs. 8.4%), arms/legs (18.3% vs. 10.2%), chest/abdomen (38.1% vs. 9.2%) and persistent hair loss (14.0% vs. 6.3%). In age-, sex-, and race-adjusted models, cranial radiation exposure ≥ 36 Gy increased the risk for head/neck disfigurement (RR 2.50; 95% CI 2.29-2.73) and persistent hair loss (RR 4.81; 95% CI 4.12-5.63). In survivors, persistent hair loss increased risk of depression (RR 1.38; 95% CI 1.12-1.70), anxiety (RR 1.63; 95% CI 1.26-2.12) and somatization (RR 1.42; 95% CI 1.18-1.71). Head/Neck disfigurement increased risk for somatization (RR 1.24; 95% CI 1.07-1.44). Reported limitations in daily functioning due to emotional symptoms was associated with head/neck disfigurement (p<0.001), arm/leg disfigurement (p=0.003) and persistent hair loss (p=0.001), controlling for sex, age, and cranial radiation therapy. CONCLUSIONS Survivors of childhood cancer are at increased risk for disfigurement and persistent hair loss, which is associated with future emotional distress and reduced quality of life. Interventions facilitating coping skills and emotional adjustment, and management strategies for these sequelae may be warranted for survivors with these physical symptoms.