title: Scarring, disfigurement, and quality of life in long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor study.
abstract: OBJECTIVE
  Childhood cancer survivors are at increased risk for adverse outcomes and chronic medical conditions. Treatment-related scarring, disfigurement, and persistent hair loss, in addition to their long-term impact on psychological distress or health-related quality of life (HRQOL), have received little attention.
  
  
  METHODS
  Self-reported scarring/disfigurement and persistent hair loss were examined in 14,358 survivors and 4,023 siblings from the Childhood Cancer Survivor Study. Multivariable models were used to examine associations with demographic and cancer treatment. The impact of disfigurement and hair loss on HRQOL (ie, Medical Outcomes Short Form-36) and emotional distress (ie, Brief Symptom Inventory-18) was examined.
  
  
  RESULTS
  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%). In age-, sex-, and race-adjusted models, cranial radiation exposure ≥ 36 Gy increased risk for head/neck disfigurement (relative risk [RR], 2.42; 95% CI, 2.22 to 2.65) and hair loss (RR, 4.24; 95% CI, 3.63 to 4.95). Adjusting for cranial radiation, 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). Limitations due to emotional symptoms were associated with head/neck disfigurement (RR, 1.24; 95% CI, 1.10 to 1.41), arm/leg disfigurement (RR, 1.19; 95% CI, 1.05 to 1.35), and hair loss (RR, 1.26; 95% CI, 1.09 to 1.47).
  
  
  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. Future studies are needed to better identify and manage functional outcomes in these patients.
authors.affiliation: Northwestern University. kkinahan@nmff.org
authors.forename: Karen E
authors.initials: KE
authors.lastname: Kinahan
authors.forename: Lisa K
authors.initials: LK
authors.lastname: Sharp
authors.forename: Kristy
authors.initials: K
authors.lastname: Seidel
authors.forename: Wendy
authors.initials: W
authors.lastname: Leisenring
authors.forename: Aarati
authors.initials: A
authors.lastname: Didwania
authors.forename: Mario E
authors.initials: ME
authors.lastname: Lacouture
authors.forename: Marilyn
authors.initials: M
authors.lastname: Stovall
authors.forename: Anand
authors.initials: A
authors.lastname: Haryani
authors.forename: Leslie L
authors.initials: LL
authors.lastname: Robison
authors.forename: Kevin R
authors.initials: KR
authors.lastname: Krull
mesh_terms: D000293:Adolescent; D000328:Adult; D000505:Alopecia / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D002921:Cicatrix / Q000523:psychology*; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology*; D017063:Outcome Assessment, Health Care; D011788:Quality of Life; D012306:Risk; D013315:Stress, Psychological / Q000453:epidemiology*; D017741:Survivors / Q000523:psychology*; D055815:Young Adult