Skin‐related quality of life in children and adolescents with congenital melanocytic naevi – an analysis of self‐ and parent reports

Abstract

Background 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.Objectives To analyse 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 CMNrelated characteristics were examined as possible predictors of impaired QoL. Results A total of 135 proxy reports for children affected by CMN aged 4-18 years (M = 9.34 years, SD = 4.16 years) and 28 self-reports of adolescents aged 14-18 years (M = 16.3 years, SD = 1.2 years) 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.

Quality of Life in Chinese Patients With Large Congenital Melanocytic Nevi

“…Unlike previous studies of some dermatological diseases, such as port-wine stains and cutaneous lupus erythematosus, young age was correlated with diminished QoL (8,18), age has less to do with QoL in patients with LCMN (10,12). In our analysis, patients with LCMN in every age group presented no significant difference in QoL, which is consistent with conclusions drawn from studies about other districts and races.…”

“…Using common sense, people usually think that a smaller CMN leads to less impairment in QoL. However, early and recent studies have highlighted that the size or visibility of CMNs has no explicit correlation with impairment (10)(11)(12). Even though there are a few studies about the QoL of patients with CMN worldwide, none have been conducted in China thus far.…”

Distribution Patterns (7B Rule) and Characteristics of Large Congenital Melanocytic Nevi: A Retrospective Cohort Study in China

“…LCMNs that manifests in the region of the head and face have much worse effects on patients' appearances and lives. A recent study of quality of life (QoL) in children and adolescents with CMNs reflected that young patients experienced emotional impairment and felt shame if the CMNs were exposed to the public (34). We used Skindex-29, a widely acknowledged questionnaire for health-related quality of life (HRQoL) assessment, to evaluate the HRQoL of 19 patients in our cohort and obtain a consistent result.…”

Giant Congenital Melanocytic Nevi of the Head and Neck: Clinical Update and Advances in Treatment

“…69 In children and adolescents, surgical treatment has especially been shown to increase quality of life because the population reports significantly lower baseline quality of life and higher emotional and behavioral problems when compared to those born without a giant congenital melanocytic nevus. 70 A worldwide analysis of 135 adolescent patients revealed the majority of adolescents self-reported their congenital nevus having a moderate to very large impact on their quality of life. Notably, the effect was more severe at older ages and if the nevus was in a visible location.…”