Psychosocial health and psychological adjustment in adolescents and young adults with congenital melanocytic nevi: Analysis of self-reports

This study assessed self-reported health-related quality of life and psychological adjustment in 43 adolescents and young adults (ages in years: 14–24, M = 17.6, SD = 2.2) with congenital melanocytic nevi (CMN) and examined associations with sociodemographic variables, characteristics of the CMN, perceived social reactions, and cognitive emotion regulation strategies. Outcome measures included the Pediatric Quality of Life Inventory$^{™}$ 4.0 and the Strengths and Difficulties Questionnaire. Findings suggest impaired psychosocial health and psychological adjustment in youth with CMN compared to community norms. Impairments were associated with higher age of participants, lower socioeconomic status, visibility of the skin lesion, perceived stigmatization, poorer perceived social support, and maladaptive cognitive emotion regulation strategies (self-blame, rumination, and catastrophizing), but not with sex of participants, extent of the skin lesion, and surgical removal of the nevus. Implications for clinical practice and future research are discussed

Stigmatization Predicts Psychological Adjustment and Quality of Life in Children and Adolescents With a Facial Difference

Objectives This cross-sectional study assessed psychological adjustment and health-related quality of life (HRQOL) in children and adolescents with congenital or acquired facial differences and identified potential predictors of adjustment. Methods Data were obtained from 88 children, ages 9 months to 16 years, by means of parent questionnaires (n = 86) and standardized interviews with children ≥7 years old (n = 31). Evaluation measures included the Child Behavior Checklist (CBCL), KIDSCREEN-27, TNO-AZL Preschool Quality of Life Questionnaire (TAPQOL), and Perceived Stigmatization Questionnaire. Results Psychological adjustment, as measured by the CBCL, was within norms. Parent-reported HRQOL was good in preschool children. Parent- and self-reported HRQOL of participants 7-16 years old was impaired in several dimensions, including psychological well-being. Psychological adjustment (especially internalizing behavior problems) and HRQOL were predicted primarily by perceived stigmatization. Conclusions Identification of stigma experiences and appropriate support may be crucial to enhancing psychological adjustment and quality of life in children with facial disfiguremen

The provision of specialist psychosocial support for people with visible differences: A European survey

© 2018 A substantial body of research has demonstrated the challenges commonly facing people with visible differences (disfigurements) and explored the potential benefits offered by specialist psychosocial support and intervention for those who are negatively affected. However, little is known about the availability of such support in Europe for people whose appearance is in any way different to ‘the norm’. This survey of 116 psychosocial specialists from 15 European countries, working with a range of patient groups, has shown a tendency for specialists to prioritise Cognitive-behavioural-based approaches, amongst a wide range of other approaches and interventional techniques. It indicates variations in the availability of support, and a perceived need for improved access to interventions, additional training, and greater awareness of the psychosocial issues associated with visible differences

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

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

How children with facial differences are perceived by non-affected children and adolescents: Perceiver effects on stereotypical attitudes

Children with a facial difference are presumed to be at risk of social stigmatization. The purposes of this study were twofold: (1) to assess the effect of facial differences on social perceptions by unaffected children and adolescents; and (2) to identify perceiver characteristics that predict stereotypical attitudes toward facial differences. Participants were 344 non-affected children and adolescents, ages 8-17 years. Participants rated digitally altered images of 12 children depicted either with or without a facial difference. Results show that participants attributed less favorable characteristics to children with a facial difference than to those without. Moreover, participants reported less willingness to interact with or befriend a child with a facial difference. Significant predictors of low discriminative attitudes were older participant age and previous contact with someone with a facial difference. Our data call attention to the need for public education programs targeted at reducing negative attitudes toward facial differences

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

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

Surgical treatment of children and youth with congenital melanocytic nevi: self- and proxy-reported opinions

Purpose: The role of surgery in the management of congenital melanocytic nevi (CMN) is controversial. Data on surgical outcomes and predictors of satisfaction remain scarce. Methods: An online survey was employed following worldwide recruitment of youth aged 14-25 years (n = 44) and parents of children ≤ 18 years (n = 249) with CMN to query patterns of treatment and satisfaction with and opinions about the benefits of surgery. Results: In proxy-reports, 121 of 249 (49%) and in self-reports 30 of 44 (75%) participants underwent CMN excision. The most common reasons for surgery were psychosocial determinants, aesthetic improvement, and melanoma risk reduction. The overall satisfaction with surgical management was good, although no predictors for satisfaction could be identified. Higher current age of the child was found to predict decision regret in proxy-reports. Most participants indicated that having a scar is more socially acceptable than a CMN. Opinions differed on whether surgery should be deferred until the child is old enough to be involved in the decision-making process. Conclusion: Whether and when to perform surgery in children with CMN is a multifaceted question. Awareness of common concerns as well as risks and benefits of surgery are essential to ensure critical reflection and balanced decision-making

Self- and parent-perceived stigmatisation in children and adolescents with congenital or acquired facial differences

BACKGROUND: The risk of social stigmatisation is an important determinant in the decision for plastic and reconstructive surgery in children and adolescents. The purposes of this cross-sectional study were threefold: (1) to assess self- and proxy-reported stigma experiences of children and adolescents with congenital or acquired facial differences; (2) to compare patients versus controls; and (3) to identify predictors of perceived stigmatisation. METHODS: Data were obtained from a cohort of 87 children (ages 9 months to 16 years) with facial burn scars, port-wine stains, infantile haemangioma or congenital melanocytic nevi, using parent questionnaires (n = 85) and standardised interviews in children older than 7 years (n = 29). Perceived stigmatisation was assessed with the Perceived Stigmatization Questionnaire. Self-reported stigmatisation was compared versus a matched control group consisting of 29 children and adolescents without a facial difference. Medical, demographic and parental psychological variables were examined as predictors of proxy-perceived stigmatisation. RESULTS: Patients with a facial difference reported significantly higher levels of stigma experiences than control subjects. A majority of the patients reported having experienced expressions of pity, staring or startled reactions; and about one-quarter had been teased about their facial difference. Multivariate analysis indicated that proxy-perceived stigmatisation was predicted by larger size of the facial difference and greater age of the child. Gender and type of facial difference (acquired vs. congenital) had no significant impact. CONCLUSIONS: These results demonstrate that children with a facial difference are at higher risk of experiencing stigmatisation than children without a visible difference. Children with a facial difference that covers more than 25% of their face are particularly vulnerable to stigmatisation and therefore need special monitoring