Scarring, Disfigurement, and Quality of Life in Long-Term Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study

Author:

Kinahan Karen E.1,Sharp Lisa K.1,Seidel Kristy1,Leisenring Wendy1,Didwania Aarati1,Lacouture Mario E.1,Stovall Marilyn1,Haryani Anand1,Robison Leslie L.1,Krull Kevin R.1

Affiliation:

1. Karen E. Kinahan, Aarati Didwania, and Anand Haryani, Northwestern University; Lisa K. Sharp, University of Illinois at Chicago, Chicago, IL; Kristy Seidel and Wendy Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA; Mario E. Lacouture, Memorial Sloan-Kettering Comprehensive Cancer Center, New York, NY; Marilyn Stovall, The University of Texas MD Anderson Cancer Center, Houston, TX; and Leslie L. Robison and Kevin R. Krull, St Jude Children's Research Hospital, Memphis, TN.

Abstract

Purpose 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. Patients and 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). Conclusion 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.

Publisher

American Society of Clinical Oncology (ASCO)

Subject

Cancer Research,Oncology

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