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; Landolt, Markus A.

doi:10.1093/jpepsy/jsz017

Cited by 35 publications

(46 citation statements)

References 28 publications

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“…In our study, the largest effect on QoL reported in self‐reports was for clothing decisions and ‘feeling embarrassed, self‐conscious, upset or sad because of the skin’, suggesting that CMN may cause an emotional rather than a functional impairment of QoL in adolescents. This finding is in line with the results of our previous study assessing generic health‐related QoL in children and adolescents with CMN …”

Section: Discussionsupporting

confidence: 93%

“…Most reports have investigated common skin conditions such as acne, vitiligo and atopic eczema, but there is a paucity of data on QoL for individuals with CMN . One study has found lower health‐related QoL in children and adolescents with CMN compared to population norms, but generic instruments were used which may lack sufficient sensitivity for dermatology‐specific impairments . To date, there is only one study assessing dermatology‐specific QoL instruments .…”

Section: Introductionmentioning

confidence: 99%

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

Neuhaus

Landolt

Theiler

et al. 2020

Acad Dermatol Venereol

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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.

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Section: Discussionsupporting

confidence: 93%

Section: Introductionmentioning

confidence: 99%

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

Neuhaus

Landolt

Theiler

et al. 2020

Acad Dermatol Venereol

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“…Many families of children with CMN feel that their children were treated differently because of their difference . Masnari et al identified high levels of perceived stigmatization to be a predictor of impaired health‐related quality of life and psychologic adjustment in children and adolescents with CMN.…”

Section: Introductionmentioning

confidence: 99%

“…Many families of children with CMN feel that their children were treated differently because of their difference. 17 Masnari et al 18 The decision to operate or not challenges caregivers. Thus, comprehensive information provided by experts in the field is needed including true MM risk, and thorough information about potential psychologic burden, surgical options, and expected aesthetic outcomes of surgery.…”

Section: Introductionmentioning

confidence: 99%

Management of congenital melanocytic nevi in the plastic surgery clinic: Families′ expectations and their persistent concern about malignancy

Mosa

Heinelt

et al. 2019

Pediatric Dermatology

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Background Children with congenital melanocytic nevi (CMN) were historically managed with surgical removal to lower the risk of malignant transformation. The evolving literature over the last decade has indicated a significantly lower risk than previously estimated. Indications for excision currently revolve around aesthetic and psychosocial concerns. This study describes and evaluates the perspectives and expectations of patients and families referred to a pediatric plastic surgery clinic on CMN management. Method A two‐part questionnaire was administered before and after an initial clinic appointment to evaluate patient and family concerns of lesion growth, risk of malignancy, treatment expectations, and stigmatization. Results Thirty questionnaires were completed for 11 male and 19 female patients, mean age 9.2 years (1‐25). Referring doctors (majority dermatologists) were rarely concerned about malignancy (8%), but parents listed it as a top reason for wanting the CMN removed (37%) and the most common expectation for the visit followed by information about surgical options and outcome. Before the clinic, 93% were at least “slightly” worried about CMN growth and 96% about malignancy, whereas 63% and 72%, respectively, after the clinic. Conclusions Families want information about surgical excision and are concerned about malignancy, indicating lingering misinformation or misconception about melanoma risk. For the majority, CMN removal remains at least slightly important, presumably for aesthetic reasons and remaining concern about malignancy. Involved health care professionals should assure reliable and coherent patient information about MM risk, indications for surgery and expected outcome to best support families’ decision‐making.

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“…The psychosocial impairment caused by the conspicuousness of the birthmark – next to its localization (e.g. face) – is essentially determined by the contrast between the basic colour of the surrounding skin and the darkness of the CMN …”

mentioning

confidence: 99%

Congenital melanocytic naevi. Who benefits from a therapy?

Krengel¹

2020

Br J Dermatol

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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

Cited by 35 publications

References 28 publications

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

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

Management of congenital melanocytic nevi in the plastic surgery clinic: Families′ expectations and their persistent concern about malignancy

Congenital melanocytic naevi. Who benefits from a therapy?

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