Impact of Persistent Alopecia on Quality of Life in Childhood Cancer and Transplant Survivors.

Background: While alopecia associated with chemotherapy, radiation, or hematopoietic stem-cell transplant (C/R/HSCT) is transient in most children, prior reports indicate nearly one in seven childhood cancer survivors suffer from persistent alopecia after their treatment is completed. The objective of our study was to better characterize the impact of C/R/HSCT-associated persistent alopecia on patient quality of life.

Procedure: A cross-sectional cohort study of patients with a history of C/R/HSCT who were seen at Dana Farber Cancer Institute/Boston Children's Hospital Dermatology from August 2023 to February 2024 for any indication was conducted. Patients who completed their C/R/HSCT treatment regimen >6 months prior to visit were invited to fill out a survey on patient experience with persistent alopecia, including a modified Children's Dermatology Life Quality Index (CDLQI). Participants also underwent a full scalp examination.

Results: Twenty one out of 47 (44.7%) patients in our cohort self-reported persistent alopecia. For nine additional patients, alopecia was not self-reported but noted by a dermatologist on exam. Median self-reported alopecia severity was 3 (interquartile range [IQR] 2-5.25) on a visual analog scale of 1-10. The most common pattern of alopecia was diffuse thinning. Median CDLQI score was 5 (IQR 2-7) for those with persistent alopecia, indicating a small negative effect of disease on patient quality of life. Fifteen (31.9%) patients report receiving information about persistent alopecia prior to their C/R/HSCT.

Conclusions: Nearly half of childhood cancer and transplant survivors evaluated by dermatology suffered from persistent alopecia, which negatively impacted their quality of life. Better counseling on persistent alopecia should be provided to childhood cancer patients.