Questionnaire study in Xeroderma Pigmentosum
Research type
Research Study
Full title
Questionnaire study of psychosocial correlates of ultraviolet protection behaviour in patients with Xeroderma Pigmentosum
IRAS ID
172985
Contact name
Robert Sarkany
Contact email
Sponsor organisation
Guy's & St Thomas' Foundation NHS Trust
Duration of Study in the UK
2 years, 0 months, 0 days
Research summary
Xeroderma pigmentosum (XP) is a rare inherited disease. Most patients die by age 35, usually from skin cancer. Patients’ skin is defenceless against ultraviolet, so daylight causes skin cancers from childhood onwards. The only way to prevent the skin cancers is drastic light protection: avoiding daylight, ultraviolet-protective window films, wearing gloves and face visors. Some patients manage, but others do not protect well despite the efforts of their doctors and nurses. Research in other diseases has discovered why patients sometimes do not follow treatment advice: although practical issues can be important, patients' choices are mainly affected by psychological and social factors.
In this questionnaire study, we aim to discover the psychosocial factors preventing some XP patients from protecting their skin. The questions will be about: How does the patient protect from UV, the patient’s beliefs regarding XP, details of the patient’s illness. We will also explore the financial costs of the disease to patients.
We will use the results of this study, along with data from an‘Interview study in Xeroderma Pigmentosum’ (REC Ref No. TBC), and with questionnaire data generated by colleagues in other countries (in studies separate from this one), for a later study to develop a ‘behaviour change intervention’ to help patients deal with these factors and UV protect better. This strategy has been successfully used in patients with other diseases (Craig et al, British Medical Journal, 337, 979–983 (2008)). The study is a partnership of the National Xeroderma Pigmentosum Service in London, with a Health Psychology team who specialise in the underlying psychological causes which prevent patients adhering to their medical treatments. It is funded by the National Institute for Health Research (NIHR).REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
15/LO/1355
Date of REC Opinion
14 Oct 2015
REC opinion
Further Information Favourable Opinion