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

Published:January 09, 2019DOI:


      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.


      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.


      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.


      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.


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


      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.

      Key words

      Abbreviations used:

      AA (alopecia areata), AT (alopecia totalis), AU (alopecia universalis), CDLQI (Children's Dermatology Life Quality Index), FDLQI (Family Dermatology Life Quality Index), QLCCDQ (Quality of Life in Chronic Child's Disease Questionnaire), QoL (quality of life), SALT (Severity of Alopecia Tool), SD (standard deviation)
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        • Madani S.
        • Shapiro J.
        Alopecia areata update.
        J Am Acad Dermatol. 2000; 42: 549-566
        • Gulec A.T.
        • Tanriverdi N.
        • Dürü Ç.
        • Saray Y.
        • Akçali C.
        The role of psychological factors in alopecia areata and the impact of the disease on the quality of life.
        Int J Dermatol. 2004; 43: 352-356
        • Williamson D.
        • Gonzalez M.
        • Finlay A.Y.
        The effect of hair loss on quality of life.
        J Eur Acad Dermatol Venerol. 2014; 15: 137-139
        • Bilgiç Ö.
        • Bilgiç A.
        • Bahalı K.
        • Bahali A.G.
        • Gürkan A.
        • Yılmaz S.
        Psychiatric symptomatology and health-related quality of life in children and adolescents with alopecia areata.
        J Eur Acad Dermatol Venereol. 2014; 28: 1463-1468
        • Liu L.Y.
        • King B.A.
        • Craiglow B.G.
        Alopecia areata is associated with impaired health-related quality of life: a survey of affected adults and children, and their families.
        J Am Acad Dermatol. 2018; 79: 556-558.e1
        • Tollefson M.M.
        • Finnie D.M.
        • Schoch J.J.
        • Eton D.T.
        Impact of childhood psoriasis on parents of affected children.
        J Am Acad Dermatol. 2016; 76: 286-289
        • Pustišek N.
        • Vurnek Živković M.
        • Šitum M.
        Quality of life in families with children with atopic dermatitis.
        Pediatr Dermatol. 2016; 33: 28-32
        • Farnik M.
        • Brożek G.
        • Pierzchała W.
        • Zejda J.E.
        • Skrzypek M.
        • Walczak Ł.
        Development, evaluation and validation of a new instrument for measurement quality of life in the parents of children with chronic disease.
        Health Qual Life Outcomes. 2010; 8: 151
        • Liu L.Y.
        • King B.A.
        • Craiglow B.G.
        Health-related quality of life (HRQoL) among patients with alopecia areata (AA): a systematic review.
        J Am Acad Dermatol. 2016; 75: 806-812
        • Basra M.K.A.
        • Sue-Ho R.
        • Finlay A.Y.
        The Family Dermatology Life Quality Index: measuring the secondary impact of skin disease.
        Br J Dermatol. 2007; 156: 528-538
        • Lewis-Jones M.S.
        • Finlay A.Y.
        The Children's Dermatology Life Quality Index (CDLQI): initial validation and practical use.
        Br J Dermatol. 1995; 132: 942-949
        • Marciniak J.
        • Reich A.
        • Szepietowski J.C.
        Quality of life of parents of children with atopic dermatitis.
        Acata Derm Venerol. 2017; 97: 711-714
        • Martinez-Garcia E.
        • Arias-Santiago S.
        • Valenzuela-Salas I.
        • Garrido-Colmenero C.
        • Garcia-Mellado V.
        • Buendia-Eisman A.
        Quality of life in persons living with psoriasis patients.
        J Am Acad Dermatol. 2014; 71: 302-307
        • Skoner D.
        Outcome measures in childhood asthma.
        Pediatrics. 2002; 109: 393-398
        • Schor E.L.
        Family pediatrics: report of the Task Force on the Family.
        Pediatrics. 2003; 111: 1531-1571