Severity of disease and quality of life in parents of children with alopecia areata, totalis, and universalis: a prospective, cross-sectional study

Publication date: Available online 8 January 2019

Source: Journal of the American Academy of Dermatology

Author(s): Elana Putterman, Deepa P. Patel, Gabriela Andrade, Katya L. Harfmann, Marcia Hogeling, Carol E. Cheng, Carolyn Goh, Rachel S. Rogers, Leslie Castelo-Soccio

Abstract

Background

Caregiver-oriented quality of life research (QoL) in alopecia areata is limited. No study has used a parent-tailored survey to examine the relationship between QoL and severity of alopecia as measured by SALT scores.

Objectives

This is a prospective study that describes QoL in parents of pediatric patients with all subtypes of alopecia areata and investigates the relationship between QoL and severity of disease, duration of disease, and age of patients.

Methods

Pediatric patients and their parents were invited to participate during clinic visits. Participating parents completed the Quality of Life in a Child's Chronic Disease Questionnaire (QLCCDQ) and the Family Dermatology Life Quality Index (FDLQI). A subset of children completed the Children's Dermatologic Life Quality Index (CDLQI). Severity of alopecia tool (SALT) scores at time of survey completion were recorded.

Results

153 patients were included. Significant mild to moderate negative correlations were found between SALT scores and FDLQI scores, QLCCDQ scores, and QLCCDQ emotional domain scores. Age of child correlated negatively with QLCCDQ scores but not FDLQI scores. No significant correlation was found between duration of disease and FDLQI scores, QLCCDQ scores, or QLCCDQ emotional domain scores.

Limitations

This study is limited by its small sample size and cross-sectional design.

Conclusions

Impaired parental QoL may be associated with increasing severity of disease and age of affected child but not duration of disease. Providers should tailor counseling accordingly and help parents set realistic expectations for long-term experience with the disease.

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