Abstract

Congenital melanocytic naevi (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. To analyse skin-related QoL in children and adolescents with CMN and to identify predictors of low QoL. 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. A total of 135 proxy reports for children affected by CMN aged 4-18years (M=9.34years, SD=4.16years) and 28 self-reports of adolescents aged 14-18years (M=16.3years, SD=1.2years) 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. 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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