Xeroderma Pigmentosum (XP)
Paediatric Melanoma and Genetic Skin Cancer Pre-disposition Syndromes
This study aims to explore the experiences of children and families living with a genetic skin cancer pre-disposition syndrome. Specifically, Xeroderma Pigmentosum (XP) is a rare genetic disorder increasing sensitivity to UV radiation.
Little is known about the psychosocial impact of this condition on children diagnosed and their families. Lifestyle factors in combination with environmental conditions mean that Australian children living with XP are particularly susceptible to detrimental outcomes if adequate sun-protection strategies are not used. Life-altering practices often include application of UV filtering to the home and school environments, clothing made from total UV-blocking material, and consistent sunscreen re-application in environments where sun exposure may occur.
What this study aims to achieve
This study hopes to develop a greater understanding of the ways children diagnosed with XP and their families have been impacted. Qualitative interviews with children and families will be used to improve understanding and preferences for care. This study will explore the physical, psychological, functional, education and financial impacts of an XP diagnosis. Finally, information needs and preferences for new models of care will be identified to inform future guidelines.
Would you like to learn more?
If you would like to learn more about this study, please contact the study coordinator, Dr Jordana McLoone j.mcloone@unsw.edu.au.