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

J Am Acad Dermatol. 2019 May;80(5):1389-1394. doi: 10.1016/j.jaad.2018.12.051. Epub 2019 Jan 8.


Background: Caregiver-oriented quality of life (QoL) research 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 Severity of Alopecia Tool (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). SALT scores at time of survey completion were recorded.

Results: In total, 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 parent QoL might 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.

Keywords: Severity of Alopecia Tool; alopecia areata; alopecia totalis; alopecia universalis; hair loss; quality of life.

MeSH terms

  • Adolescent
  • Adult
  • Age Factors
  • Alopecia / psychology*
  • Alopecia Areata / psychology*
  • Child
  • Child, Preschool
  • Cross-Sectional Studies
  • Emotions
  • Female
  • Humans
  • Male
  • Middle Aged
  • Parents / psychology*
  • Prospective Studies
  • Quality of Life*
  • Severity of Illness Index
  • Surveys and Questionnaires
  • Time Factors
  • Young Adult

Supplementary concepts

  • Alopecia universalis