Identifying the psychosocial predictors of ultraviolet exposure to the face in patients with xeroderma pigmentosum: a study of the behavioural factors affecting clinical outcomes in this genetic disease

Robert Sarkany, Sam Norton, Martha Canfield, Myfanwy Morgan, Lesley Foster, Kirby Sainsbury, Vera Araujo-Soares, Hans Christian Wulf, John Weinman, Jessica Walburn

Abstract

BACKGROUND: For patients with xeroderma pigmentosum (XP), the main means of preventing skin and eye cancers is extreme protection against ultraviolet radiation (UVR), particularly for the face. We have recently developed a methodology for objectively measuring photoprotection behaviour ('UVR dose to facial skin') and have found that the degree of photoprotection varies greatly between patients with XP. We have previously identified factors affecting photoprotection behaviour in XP using a subjective measure of photoprotection. Here, we have used this objective methodology to identify the factors which determine photoprotection behaviour in XP.

METHODS: We studied 29 psychological, social, demographic and clinical variables in 36 patients with XP. We have previously objectively measured UVR protection (by measuring the dose of UVR reaching the skin of the face over a 3-week period) in these patients. Here, we use linear mixed-effects model analysis to identify the factors which lead to the differences in degree of photoprotection observed in these patients.

RESULTS: Psychosocial factors accounted for as much of the interindividual variation in photoprotection behaviour (29%) as demographic and clinical factors (24%). Psychosocial factors significantly associated with worse UVR protection included: automaticity of the behaviours, and a group of beliefs and perceptions about XP and photoprotection known to associate with poor treatment adherence in other diseases.

CONCLUSIONS: We have identified factors contributing to poor photoprotection in XP. Identifying these potentially reversible psychosocial features has enabled us to design an intervention to improve photoprotection in patients with XP, aiming to prevent skin and eye cancers in these patients.

Original languageEnglish
JournalJournal of Medical Genetics
Volume59
Issue number11
Pages (from-to)1095-1103
Number of pages9
ISSN0022-2593
DOIs
Publication statusPublished - Nov 2022

Keywords

  • Humans
  • Xeroderma Pigmentosum/complications
  • Ultraviolet Rays/adverse effects
  • Skin Neoplasms/genetics
  • Face
  • Eye Neoplasms
  • DNA Repair

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