Adherence to face photoprotection behaviours in in Xeroderma Pigmentosum (XP) patients: initial validation of a new measure

Author:

Canfield MarthaORCID,Norton SamORCID,Walburn Jess,Morrison-Bowen Natalie,Araujo-Soares Vera,Sainsbury Kirby,Sarkany Robert,Weinman John

Abstract

Background: Few studies have examined photoprotection practices in individuals with rare genetic diseases, such as Xeroderma Pigmentosum (XP), where photoprotection is an important aspect of managing the condition. Currently no validated self-report tool exists for assessing adherence. Aims: We sought to validate a self-reported measure of adherence to face photoprotection behaviours in individuals diagnosed with XP. Methods: 66 XP patients recruited from the patient list of the XP specialist service in London, UK, completed a survey including self-reported adherence to specific photoprotection behaviours and wore a wrist-worn UVR electronic dosimeter for 21 days while also completing a daily UVR photoprotection diary. Internal reliability and convergent validity of the measure was explored in relation to self-reported UVR photoprotection practices, clinical variables, and objective measures of UVR protection. Results: Internal consistency of the self-reported scale was satisfactory. Correlations between the adherence to photoprotection measure with other photoprotection practices and clinical variables ranged from small to large in size. There was general agreement between the self-reported measure and diary and dosimeter measures as the mean scores for levels of adherence to photoprotection increased with average day protection. However, there were outliers specifically at the higher ends of average day protection and poor agreement between levels of adherence to the face photoprotection and the amount of UVR dose reaching the face. Conclusions: Findings showed that our measure may provide a standardised and internally reliable self-reported assessment of UVR protection. However, given the potential low sensitivity to detect high adherence, we encourage future studies to combine objective and subjective reports to increase the confidence in the accuracy of the measure of adherence to face photoprotection.

Publisher

Center for Open Science

同舟云学术

1.学者识别学者识别

2.学术分析学术分析

3.人才评估人才评估

"同舟云学术"是以全球学者为主线,采集、加工和组织学术论文而形成的新型学术文献查询和分析系统,可以对全球学者进行文献检索和人才价值评估。用户可以通过关注某些学科领域的顶尖人物而持续追踪该领域的学科进展和研究前沿。经过近期的数据扩容,当前同舟云学术共收录了国内外主流学术期刊6万余种,收集的期刊论文及会议论文总量共计约1.5亿篇,并以每天添加12000余篇中外论文的速度递增。我们也可以为用户提供个性化、定制化的学者数据。欢迎来电咨询!咨询电话:010-8811{复制后删除}0370

www.globalauthorid.com

TOP

Copyright © 2019-2024 北京同舟云网络信息技术有限公司
京公网安备11010802033243号  京ICP备18003416号-3