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Skin-related quality of life in children and adolescents with congenital melanocytic nevi - analysis of self- and parent reports


Neuhaus, Kathrin; Landolt, Markus A; Theiler, Martin; Schiestl, Clemens; Masnari, Ornella (2019). Skin-related quality of life in children and adolescents with congenital melanocytic nevi - analysis of self- and parent reports. Journal of the European Academy of Dermatology and Venerology:Epub ahead of print.

Abstract

BACKGROUND: Congenital melanocytic nevi (CMN) may affect patient quality of life (QoL) due to medical complications (development of malignant melanoma or involvement of the central nervous system), skin-related discomfort or psychosocial sequelae.

OBJECTIVES: To analyze skin-related QoL in children and adolescents with CMN and to identify predictors of low QoL.

METHODS: Worldwide recruitment of participants through patient support groups. Data collection through a web-based survey. QoL was assessed using the Children's Dermatology Life Quality Index$^{©}$ (CDLQI). Demographic and CMN-related characteristics were examined as possible predictors of impaired QoL.

RESULTS: 135 proxy-reports for children affected by CMN aged between 4-18 years (M = 9.34y, SD = 4.16y) and 28 self-reports of adolescents aged 14 -18 years (M =16.3y, SD = 1.2y) were included. The mean CDLQI score was 4.00 (SD = 4.39) for proxy-reports and 6.89 (SD = 5.85) for self-reports. Most parents (76%) reported 'no' or a 'small' impact, 19% a 'moderate', and 5% a 'very large' or 'extremely large' impact on their child's QoL. In self-reports, 46% of the adolescents reported 'no' or a 'small impact', 43% a 'moderate', and 11% a 'very large' or 'extremely large' impact. Visible CMN location, malignant melanoma, and higher child's age were important predictors of QoL impairments.

CONCLUSIONS: Most CMN have a modest effect on QoL. However, there is large variability with a significant proportion of adolescents experiencing a moderate to large impact on QoL in contrast to children. Healthcare professionals should be aware of the predictors of QoL in children with CMN.

Abstract

BACKGROUND: Congenital melanocytic nevi (CMN) may affect patient quality of life (QoL) due to medical complications (development of malignant melanoma or involvement of the central nervous system), skin-related discomfort or psychosocial sequelae.

OBJECTIVES: To analyze skin-related QoL in children and adolescents with CMN and to identify predictors of low QoL.

METHODS: Worldwide recruitment of participants through patient support groups. Data collection through a web-based survey. QoL was assessed using the Children's Dermatology Life Quality Index$^{©}$ (CDLQI). Demographic and CMN-related characteristics were examined as possible predictors of impaired QoL.

RESULTS: 135 proxy-reports for children affected by CMN aged between 4-18 years (M = 9.34y, SD = 4.16y) and 28 self-reports of adolescents aged 14 -18 years (M =16.3y, SD = 1.2y) were included. The mean CDLQI score was 4.00 (SD = 4.39) for proxy-reports and 6.89 (SD = 5.85) for self-reports. Most parents (76%) reported 'no' or a 'small' impact, 19% a 'moderate', and 5% a 'very large' or 'extremely large' impact on their child's QoL. In self-reports, 46% of the adolescents reported 'no' or a 'small impact', 43% a 'moderate', and 11% a 'very large' or 'extremely large' impact. Visible CMN location, malignant melanoma, and higher child's age were important predictors of QoL impairments.

CONCLUSIONS: Most CMN have a modest effect on QoL. However, there is large variability with a significant proportion of adolescents experiencing a moderate to large impact on QoL in contrast to children. Healthcare professionals should be aware of the predictors of QoL in children with CMN.

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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > University Children's Hospital Zurich > Medical Clinic
06 Faculty of Arts > Institute of Psychology
04 Faculty of Medicine > University Children's Hospital Zurich > Clinic for Surgery
Dewey Decimal Classification:150 Psychology
Language:English
Date:5 December 2019
Deposited On:09 Jan 2020 10:28
Last Modified:16 Feb 2020 07:06
Publisher:Wiley-Blackwell Publishing, Inc.
ISSN:0926-9959
Additional Information:This is the peer reviewed version of the following article: Skin-related quality of life in children and adolescents with congenital melanocytic nevi - analysis of self- and parent reports. - Neuhaus K, Landolt MA, Theiler M, Schiestl C, Masnari O. - J Eur Acad Dermatol Venereol, which has been published in final form at https://doi.org/10.1111/jdv.16131. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions.
OA Status:Closed
Publisher DOI:https://doi.org/10.1111/jdv.16131
PubMed ID:31803958

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