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Predictors of Health-related Quality of Life and Psychological Adjustment in Children and Adolescents With Congenital Melanocytic Nevi: Analysis of Parent Reports


Masnari, Ornella; Neuhaus, Kathrin; Aegerter, Tilla; Reynolds, Shawn; Schiestl, Clemens M; Landolt, Markus A (2019). Predictors of Health-related Quality of Life and Psychological Adjustment in Children and Adolescents With Congenital Melanocytic Nevi: Analysis of Parent Reports. Journal of Pediatric Psychology, 44(6):714-725.

Abstract

OBJECTIVES: This cross-sectional study assessed health-related quality of life (HRQOL) and psychological adjustment in children and adolescents affected by congenital melanocytic nevi (CMN) and identified potential predictors of adjustment.

METHODS: Participants were recruited worldwide with the help of patient organizations. Data were obtained from parents of 235 children affected by CMN, aged between 1 month and 18 years (M = 6.3 y; SD = 5.0 y), using a web-based survey. Measures included the Pediatric Quality of Life InventoryTM 4.0 and the Strengths and Difficulties Questionnaire. Sample scores were compared to normative data. Demographic characteristics as well as CMN-related variables were examined as possible predictors of outcome, using multivariate analyses.

RESULTS: Parents of children and adolescents born with a CMN reported significantly lower HRQOL and somewhat higher emotional and behavioral problems compared to community norms. Impairments in HRQOL and psychological adjustment were predicted by lower socioeconomic status, neurological problems, skin-related discomfort (e.g., itch or pain), and perceived stigmatization. The size of the CMN and whether or not the CMN had been (partially) removed by surgery were no significant predictors. The relationship between visibility of the skin lesion and psychological adjustment and psychosocial health was found to be mediated by perceived stigmatization.

CONCLUSIONS: In children and adolescents affected by CMN, those experiencing neurological problems, skin-related discomfort or high levels of perceived stigmatization are particularly vulnerable for impaired HRQOL and psychological maladjustment and therefore might need special monitoring and support.

Abstract

OBJECTIVES: This cross-sectional study assessed health-related quality of life (HRQOL) and psychological adjustment in children and adolescents affected by congenital melanocytic nevi (CMN) and identified potential predictors of adjustment.

METHODS: Participants were recruited worldwide with the help of patient organizations. Data were obtained from parents of 235 children affected by CMN, aged between 1 month and 18 years (M = 6.3 y; SD = 5.0 y), using a web-based survey. Measures included the Pediatric Quality of Life InventoryTM 4.0 and the Strengths and Difficulties Questionnaire. Sample scores were compared to normative data. Demographic characteristics as well as CMN-related variables were examined as possible predictors of outcome, using multivariate analyses.

RESULTS: Parents of children and adolescents born with a CMN reported significantly lower HRQOL and somewhat higher emotional and behavioral problems compared to community norms. Impairments in HRQOL and psychological adjustment were predicted by lower socioeconomic status, neurological problems, skin-related discomfort (e.g., itch or pain), and perceived stigmatization. The size of the CMN and whether or not the CMN had been (partially) removed by surgery were no significant predictors. The relationship between visibility of the skin lesion and psychological adjustment and psychosocial health was found to be mediated by perceived stigmatization.

CONCLUSIONS: In children and adolescents affected by CMN, those experiencing neurological problems, skin-related discomfort or high levels of perceived stigmatization are particularly vulnerable for impaired HRQOL and psychological maladjustment and therefore might need special monitoring and support.

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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
Dewey Decimal Classification:150 Psychology
Language:English
Date:1 July 2019
Deposited On:13 May 2019 14:37
Last Modified:17 Sep 2019 20:22
Publisher:Oxford University Press
ISSN:0146-8693
OA Status:Closed
Free access at:Publisher DOI. An embargo period may apply.
Publisher DOI:https://doi.org/10.1093/jpepsy/jsz017
Related URLs:https://academic.oup.com/jpepsy
PubMed ID:30916755
Project Information:
  • : FunderNevus Outreach Inc
  • : Grant ID
  • : Project Title

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