An investigation of the predictors of photoprotection and UVR dose to the face in patients with XP

a protocol using observational mixed methods

Jessica Walburn, Robert Sarkany, Sam Norton, Lesley Foster, Myfanwy Morgan, Kirby Sainsbury, Vera Araújo-Soares, Rebecca Anderson, Isabel Garrood, Jakob Heydenreich, Falko F Sniehotta, Rute Vieira, Hans Christian Wulf, John Weinman

Research output: Contribution to journalArticle

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Abstract

INTRODUCTION: Xeroderma pigmentosum (XP) is a rare genetic condition caused by defective nucleotide excision repair and characterised by skin cancer, ocular and neurological involvement. Stringent ultraviolet protection is the only way to prevent skin cancer. Despite the risks, some patients' photoprotection is poor, with a potentially devastating impact on their prognosis. The aim of this research is to identify disease-specific and psychosocial predictors of photoprotection behaviour and ultraviolet radiation (UVR) dose to the face.

METHODS AND ANALYSIS: Mixed methods research based on 45 UK patients will involve qualitative interviews to identify individuals' experience of XP and the influences on their photoprotection behaviours and a cross-sectional quantitative survey to assess biopsychosocial correlates of these behaviours at baseline. This will be followed by objective measurement of UVR exposure for 21 days by wrist-worn dosimeter and daily recording of photoprotection behaviours and psychological variables for up to 50 days in the summer months. This novel methodology will enable UVR dose reaching the face to be calculated and analysed as a clinically relevant endpoint. A range of qualitative and quantitative analytical approaches will be used, reflecting the mixed methods (eg, cross-sectional qualitative interviews, n-of-1 studies). Framework analysis will be used to analyse the qualitative interviews; mixed-effects longitudinal models will be used to examine the association of clinical and psychosocial factors with the average daily UVR dose; dynamic logistic regression models will be used to investigate participant-specific psychosocial factors associated with photoprotection behaviours.

ETHICS AND DISSEMINATION: This research has been approved by Camden and King's Cross Research Ethics Committee 15/LO/1395. The findings will be published in peer-reviewed journals and presented at national and international scientific conferences.

Original languageEnglish
Article numbere018364
JournalBMJ Open
Volume7
Issue number8
DOIs
Publication statusPublished - 21 Aug 2017

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Xeroderma Pigmentosum
Radiation
Skin Neoplasms
Interviews
Psychology
Eye Neoplasms
Logistic Models
Research
Research Ethics Committees
Wrist
DNA Repair
Cross-Sectional Studies

Keywords

  • Journal Article

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An investigation of the predictors of photoprotection and UVR dose to the face in patients with XP : a protocol using observational mixed methods. / Walburn, Jessica; Sarkany, Robert; Norton, Sam; Foster, Lesley; Morgan, Myfanwy; Sainsbury, Kirby; Araújo-Soares, Vera; Anderson, Rebecca; Garrood, Isabel; Heydenreich, Jakob; Sniehotta, Falko F; Vieira, Rute; Wulf, Hans Christian; Weinman, John.

In: BMJ Open, Vol. 7, No. 8, e018364, 21.08.2017.

Research output: Contribution to journalArticle

Walburn, J, Sarkany, R, Norton, S, Foster, L, Morgan, M, Sainsbury, K, Araújo-Soares, V, Anderson, R, Garrood, I, Heydenreich, J, Sniehotta, FF, Vieira, R, Wulf, HC & Weinman, J 2017, 'An investigation of the predictors of photoprotection and UVR dose to the face in patients with XP: a protocol using observational mixed methods', BMJ Open, vol. 7, no. 8, e018364. https://doi.org/10.1136/bmjopen-2017-018364
Walburn, Jessica ; Sarkany, Robert ; Norton, Sam ; Foster, Lesley ; Morgan, Myfanwy ; Sainsbury, Kirby ; Araújo-Soares, Vera ; Anderson, Rebecca ; Garrood, Isabel ; Heydenreich, Jakob ; Sniehotta, Falko F ; Vieira, Rute ; Wulf, Hans Christian ; Weinman, John. / An investigation of the predictors of photoprotection and UVR dose to the face in patients with XP : a protocol using observational mixed methods. In: BMJ Open. 2017 ; Vol. 7, No. 8.
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T2 - a protocol using observational mixed methods

AU - Walburn, Jessica

AU - Sarkany, Robert

AU - Norton, Sam

AU - Foster, Lesley

AU - Morgan, Myfanwy

AU - Sainsbury, Kirby

AU - Araújo-Soares, Vera

AU - Anderson, Rebecca

AU - Garrood, Isabel

AU - Heydenreich, Jakob

AU - Sniehotta, Falko F

AU - Vieira, Rute

AU - Wulf, Hans Christian

AU - Weinman, John

N1 - © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

PY - 2017/8/21

Y1 - 2017/8/21

N2 - INTRODUCTION: Xeroderma pigmentosum (XP) is a rare genetic condition caused by defective nucleotide excision repair and characterised by skin cancer, ocular and neurological involvement. Stringent ultraviolet protection is the only way to prevent skin cancer. Despite the risks, some patients' photoprotection is poor, with a potentially devastating impact on their prognosis. The aim of this research is to identify disease-specific and psychosocial predictors of photoprotection behaviour and ultraviolet radiation (UVR) dose to the face.METHODS AND ANALYSIS: Mixed methods research based on 45 UK patients will involve qualitative interviews to identify individuals' experience of XP and the influences on their photoprotection behaviours and a cross-sectional quantitative survey to assess biopsychosocial correlates of these behaviours at baseline. This will be followed by objective measurement of UVR exposure for 21 days by wrist-worn dosimeter and daily recording of photoprotection behaviours and psychological variables for up to 50 days in the summer months. This novel methodology will enable UVR dose reaching the face to be calculated and analysed as a clinically relevant endpoint. A range of qualitative and quantitative analytical approaches will be used, reflecting the mixed methods (eg, cross-sectional qualitative interviews, n-of-1 studies). Framework analysis will be used to analyse the qualitative interviews; mixed-effects longitudinal models will be used to examine the association of clinical and psychosocial factors with the average daily UVR dose; dynamic logistic regression models will be used to investigate participant-specific psychosocial factors associated with photoprotection behaviours.ETHICS AND DISSEMINATION: This research has been approved by Camden and King's Cross Research Ethics Committee 15/LO/1395. The findings will be published in peer-reviewed journals and presented at national and international scientific conferences.

AB - INTRODUCTION: Xeroderma pigmentosum (XP) is a rare genetic condition caused by defective nucleotide excision repair and characterised by skin cancer, ocular and neurological involvement. Stringent ultraviolet protection is the only way to prevent skin cancer. Despite the risks, some patients' photoprotection is poor, with a potentially devastating impact on their prognosis. The aim of this research is to identify disease-specific and psychosocial predictors of photoprotection behaviour and ultraviolet radiation (UVR) dose to the face.METHODS AND ANALYSIS: Mixed methods research based on 45 UK patients will involve qualitative interviews to identify individuals' experience of XP and the influences on their photoprotection behaviours and a cross-sectional quantitative survey to assess biopsychosocial correlates of these behaviours at baseline. This will be followed by objective measurement of UVR exposure for 21 days by wrist-worn dosimeter and daily recording of photoprotection behaviours and psychological variables for up to 50 days in the summer months. This novel methodology will enable UVR dose reaching the face to be calculated and analysed as a clinically relevant endpoint. A range of qualitative and quantitative analytical approaches will be used, reflecting the mixed methods (eg, cross-sectional qualitative interviews, n-of-1 studies). Framework analysis will be used to analyse the qualitative interviews; mixed-effects longitudinal models will be used to examine the association of clinical and psychosocial factors with the average daily UVR dose; dynamic logistic regression models will be used to investigate participant-specific psychosocial factors associated with photoprotection behaviours.ETHICS AND DISSEMINATION: This research has been approved by Camden and King's Cross Research Ethics Committee 15/LO/1395. The findings will be published in peer-reviewed journals and presented at national and international scientific conferences.

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VL - 7

JO - BMJ Open

JF - BMJ Open

SN - 2044-6055

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