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

doi:10.1136/bmjopen-2017-018364

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 journal › Article › peer-review

16 Citations (Scopus)

7 Downloads (Pure)

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 language	English
Article number	e018364
Journal	BMJ Open
Volume	7
Issue number	8
DOIs	https://doi.org/10.1136/bmjopen-2017-018364
Publication status	Published - 21 Aug 2017

Keywords

Journal Article

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1136/bmjopen-2017-018364Licence: CC BY

An investigation of the predictors of photoprotection and UVR dose to the face in patients with XP
© 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. This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/
Final published version, 380 KBLicence: CC BY

Cite this

Walburn, J., Sarkany, R., Norton, S., Foster, L., Morgan, M., Sainsbury, K., Araújo-Soares, V., Anderson, R., Garrood, I., Heydenreich, J., Sniehotta, F. F., Vieira, R., Wulf, H. C., & 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, 7(8), Article e018364. https://doi.org/10.1136/bmjopen-2017-018364

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

@article{65860e76169946e0b2b634e902aaffd3,

title = "An investigation of the predictors of photoprotection and UVR dose to the face in patients with XP: a protocol using observational mixed methods",

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.",

keywords = "Journal Article",

author = "Jessica Walburn and Robert Sarkany and Sam Norton and Lesley Foster and Myfanwy Morgan and Kirby Sainsbury and Vera Ara{\'u}jo-Soares and Rebecca Anderson and Isabel Garrood and Jakob Heydenreich and Sniehotta, {Falko F} and Rute Vieira and Wulf, {Hans Christian} and John Weinman",

note = "{\textcopyright} 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.",

year = "2017",

month = aug,

day = "21",

doi = "10.1136/bmjopen-2017-018364",

language = "English",

volume = "7",

journal = "BMJ Open",

issn = "2044-6055",

publisher = "BMJ Publishing Group",

number = "8",

}

TY - JOUR

T1 - An investigation of the predictors of photoprotection and UVR dose to the face in patients with XP

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

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.

KW - Journal Article

U2 - 10.1136/bmjopen-2017-018364

DO - 10.1136/bmjopen-2017-018364

M3 - Article

C2 - 28827277

SN - 2044-6055

VL - 7

JO - BMJ Open

JF - BMJ Open

IS - 8

M1 - e018364

ER -

An investigation of the predictors of photoprotection and UVR dose to the face in patients with XP: a protocol using observational mixed methods

Abstract

Keywords

UN SDGs

Access to Document

Fingerprint

Cite this