Childhood vitiligo impacts emotional health of parents: a prospective, cross-sectional study of quality of life for primary caregivers

Abstract Background/objectives Individuals with vitiligo have an increased risk of depression, anxiety, social isolation and detrimental effects on body image/self-esteem. However, assessments of quality of life (QoL) impact have not focused on caregivers of children with vitiligo. To address this,...

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Main Authors: Gabriela Andrade, Sneha Rangu, Lauren Provini, Elana Putterman, Abigail Gauthier, Leslie Castelo-Soccio
Format: Article
Language:English
Published: SpringerOpen 2020-03-01
Series:Journal of Patient-Reported Outcomes
Subjects:
Online Access:http://link.springer.com/article/10.1186/s41687-020-0186-2
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spelling doaj-9c83023a23be4afdab5e3821c1b087c32020-11-25T03:20:42ZengSpringerOpenJournal of Patient-Reported Outcomes2509-80202020-03-01411510.1186/s41687-020-0186-2Childhood vitiligo impacts emotional health of parents: a prospective, cross-sectional study of quality of life for primary caregiversGabriela Andrade0Sneha Rangu1Lauren Provini2Elana Putterman3Abigail Gauthier4Leslie Castelo-Soccio5Department of Child and Adolescent Psychiatry and Behavioral Sciences, The Children’s Hospital of PhiladelphiaDepartment of Pediatrics, Section of Dermatology, The Children’s Hospital of PhiladelphiaDepartment of Pediatrics, Section of Dermatology, The Children’s Hospital of PhiladelphiaDepartment of Pediatrics, Section of Dermatology, The Children’s Hospital of PhiladelphiaDepartment of Pediatrics, Section of Dermatology, The Children’s Hospital of PhiladelphiaDepartment of Pediatrics, Section of Dermatology, The Children’s Hospital of PhiladelphiaAbstract Background/objectives Individuals with vitiligo have an increased risk of depression, anxiety, social isolation and detrimental effects on body image/self-esteem. However, assessments of quality of life (QoL) impact have not focused on caregivers of children with vitiligo. To address this, we determined the QoL impact in parents of children with vitiligo to assess the relationship between QoL parameters and disease duration, location, and severity. Methods We performed a cross-sectional study involving 123 parents of children diagnosed with vitiligo for at least 3 months, and who presented to the pediatric dermatology clinic of a major United States children’s hospital. Parents completed a demographics survey, Quality of Life in a Child’s Chronic Disease Questionnaire (QLCCDQ) and Family Dermatology Life Quality Index (FDLQI) to assess QoL measures. The lower the QLCCDQ score and higher the FLDQI score, the more quality of life is impaired. Results Subject age ranged from 20 to 57, and 13.9% received mental health intervention. QLCCDQ emotional domain scores were most impaired, and severity and location of disease impacted these scores. FDLQI scores decreased as children age, indicating overall parent wellbeing increased as children age. Conclusions Childhood vitiligo has great emotional impact on the quality of life of caregivers. Recognizing this will enable dermatologist who primarily care for these patients to incorporate care giver specific interventions during clinical visits. Emotional domain scores for parents of children with vitiligo were the most impaired as much or more than of those seen in parents of children with chronic stable medical disease such as type 1 diabetes and asthma.http://link.springer.com/article/10.1186/s41687-020-0186-2Skin differencesPigmentary disordersQuality of lifeVitiligoPediatric dermatology
collection DOAJ
language English
format Article
sources DOAJ
author Gabriela Andrade
Sneha Rangu
Lauren Provini
Elana Putterman
Abigail Gauthier
Leslie Castelo-Soccio
spellingShingle Gabriela Andrade
Sneha Rangu
Lauren Provini
Elana Putterman
Abigail Gauthier
Leslie Castelo-Soccio
Childhood vitiligo impacts emotional health of parents: a prospective, cross-sectional study of quality of life for primary caregivers
Journal of Patient-Reported Outcomes
Skin differences
Pigmentary disorders
Quality of life
Vitiligo
Pediatric dermatology
author_facet Gabriela Andrade
Sneha Rangu
Lauren Provini
Elana Putterman
Abigail Gauthier
Leslie Castelo-Soccio
author_sort Gabriela Andrade
title Childhood vitiligo impacts emotional health of parents: a prospective, cross-sectional study of quality of life for primary caregivers
title_short Childhood vitiligo impacts emotional health of parents: a prospective, cross-sectional study of quality of life for primary caregivers
title_full Childhood vitiligo impacts emotional health of parents: a prospective, cross-sectional study of quality of life for primary caregivers
title_fullStr Childhood vitiligo impacts emotional health of parents: a prospective, cross-sectional study of quality of life for primary caregivers
title_full_unstemmed Childhood vitiligo impacts emotional health of parents: a prospective, cross-sectional study of quality of life for primary caregivers
title_sort childhood vitiligo impacts emotional health of parents: a prospective, cross-sectional study of quality of life for primary caregivers
publisher SpringerOpen
series Journal of Patient-Reported Outcomes
issn 2509-8020
publishDate 2020-03-01
description Abstract Background/objectives Individuals with vitiligo have an increased risk of depression, anxiety, social isolation and detrimental effects on body image/self-esteem. However, assessments of quality of life (QoL) impact have not focused on caregivers of children with vitiligo. To address this, we determined the QoL impact in parents of children with vitiligo to assess the relationship between QoL parameters and disease duration, location, and severity. Methods We performed a cross-sectional study involving 123 parents of children diagnosed with vitiligo for at least 3 months, and who presented to the pediatric dermatology clinic of a major United States children’s hospital. Parents completed a demographics survey, Quality of Life in a Child’s Chronic Disease Questionnaire (QLCCDQ) and Family Dermatology Life Quality Index (FDLQI) to assess QoL measures. The lower the QLCCDQ score and higher the FLDQI score, the more quality of life is impaired. Results Subject age ranged from 20 to 57, and 13.9% received mental health intervention. QLCCDQ emotional domain scores were most impaired, and severity and location of disease impacted these scores. FDLQI scores decreased as children age, indicating overall parent wellbeing increased as children age. Conclusions Childhood vitiligo has great emotional impact on the quality of life of caregivers. Recognizing this will enable dermatologist who primarily care for these patients to incorporate care giver specific interventions during clinical visits. Emotional domain scores for parents of children with vitiligo were the most impaired as much or more than of those seen in parents of children with chronic stable medical disease such as type 1 diabetes and asthma.
topic Skin differences
Pigmentary disorders
Quality of life
Vitiligo
Pediatric dermatology
url http://link.springer.com/article/10.1186/s41687-020-0186-2
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