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

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.

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

Journal of Clinical Oncology ◽

10.1200/jco.2011.29.15_suppl.9038 ◽

2011 ◽

Vol 29 (15_suppl) ◽

pp. 9038-9038

Author(s):

K. E. Kinahan ◽

L. K. Sharp ◽

A. Didwania ◽

K. Seidel ◽

W. Leisenring ◽

...

Keyword(s):

Quality Of Life ◽

Childhood Cancer ◽

Cancer Survivor ◽

Childhood Cancer Survivor ◽

Childhood Cancer Survivor Study ◽

Survivors Of Childhood Cancer ◽

Long Term Survivors

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Psychosexual Functioning Among Adult Female Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study

Journal of Clinical Oncology ◽

10.1200/jco.2013.54.1086 ◽

2014 ◽

Vol 32 (28) ◽

pp. 3126-3136 ◽

Cited By ~ 45

Author(s):

Jennifer S. Ford ◽

Toana Kawashima ◽

John Whitton ◽

Wendy Leisenring ◽

Caroline Laverdière ◽

...

Keyword(s):

Quality Of Life ◽

Risk Factors ◽

Childhood Cancer ◽

Cancer Survivor ◽

Sexual Functioning ◽

Female Survivors ◽

Childhood Cancer Survivor Study ◽

Survivors Of Childhood Cancer ◽

Psychosexual Functioning

Purpose Childhood cancer survivors may be at risk for impaired psychosexual functioning as a direct result of their cancer or its treatments, psychosocial difficulties, and/or diminished quality of life. Patients and Methods Two thousand one hundred seventy-eight female adult survivors of childhood cancer and 408 female siblings from the Childhood Cancer Survivor Study (CCSS) completed a self-report questionnaire about their psychosexual functioning and quality of life. On average, participants were age 29 years (range, 18 to 51 years) at the time of the survey, had been diagnosed with cancer at a median age of 8.5 years (range, 0 to 20) and were most commonly diagnosed with leukemia (33.2%) and Hodgkin lymphoma (15.4%). Results Multivariable analyses suggested that after controlling for sociodemographic differences, survivors reported significantly lower sexual functioning (mean difference [MnD], −0.2; P = .01), lower sexual interest (MnD, −0.2; P < .01), lower sexual desire (MnD, −0.3; P < .01), lower sexual arousal (MnD, −0.3; P < .01), lower sexual satisfaction (MnD, −0.2; P = .01), and lower sexual activity (MnD, −0.1; P = .02) compared with siblings. Risk factors for poorer psychosexual functioning among survivors included older age at assessment, ovarian failure at a younger age, treatment with cranial radiation, and cancer diagnosis during adolescence. Conclusion Decreased sexual functioning among female survivors of childhood cancers seems to be unrelated to emotional factors and is likely to be an underaddressed issue. Several risk factors among survivors have been identified that assist in defining high-risk subgroups who may benefit from targeted screening and interventions.

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