Health-related quality of life and psychological well-being in children and adolescents born with a melanocytic nevus and their parents: a worldwide online survey
Principal investigators: Dr. O. Masnari, Dr. K. Neuhaus, Prof. Dr. M. Landolt, PD C. Schiestl, PD S. Reynolds,
Funding: Nevus Outreach
Duration of project: January 2016 – December 2019
Having a skin condition that causes a visible difference in appearance is assumed to have a major impact on a child’s psychosocial well-being and quality of life. However, research on psychosocial adjustment and health-related quality of life (HrQoL) in children and adolescents born with a congenital melanocytic nevus (CMN) is scarce.
Therefore this study aims to:
- assess self- and parent-reported psychological adjustment, HrQoL, and perceived stigmatization in children and adolescents born with a melanocytic nevus
- assess self-reported psychological well-being of parents
- analyze a broad range of condition-specific and psycho¬social predictor variables of individual adjustment
For this study, parents of children born with a nevus (ages 0-18) and adolescents born with a nevus (ages 14-18) are invited to complete a web-based online survey. Perceived quality of life, psychological adjustment, perceived stigmatization, valence of appearance, and fear of negative appearance evaluation will be assessed through standardized questionnaires. The use of a “peer sample” will allow the comparison of individuals born with a CMN to non-affected peers. Analysis of a broad range of condition-specific and psychosocial predictor variables will help to identify risk- and resilience-factors for individual adjustment.
The findings of this study will help to learn more about the situation of families of a child born with a nevus. This will hopefully help to improve support services for affected families in the future.