{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,14]],"date-time":"2025-12-14T18:13:13Z","timestamp":1765735993004,"version":"3.48.0"},"reference-count":33,"publisher":"BMJ","issue":"8","funder":[{"DOI":"10.13039\/501100000272","name":"National Institute for Health Research","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000272","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2017,6,27]]},"published-print":{"date-parts":[[2017,8]]},"abstract":"<jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>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\u2019 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods and analysis<\/jats:title>\n                    <jats:p>Mixed methods research based on 45 UK patients will involve qualitative interviews to identify individuals\u2019 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Ethics and dissemination<\/jats:title>\n                    <jats:p>This research has been approved by Camden and King\u2019s Cross Research Ethics Committee 15\/LO\/1395. The findings will be published in peer-reviewed journals and presented at national and international scientific conferences.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2017-018364","type":"journal-article","created":{"date-parts":[[2017,8,21]],"date-time":"2017-08-21T20:10:25Z","timestamp":1503346225000},"page":"e018364","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":15,"title":["An investigation of the predictors of photoprotection and UVR dose to the face in patients with XP: a protocol using observational mixed methods"],"prefix":"10.1136","volume":"7","author":[{"given":"Jessica","family":"Walburn","sequence":"first","affiliation":[{"name":"Institute of Pharmaceutical Science, King's College London, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Robert","family":"Sarkany","sequence":"additional","affiliation":[{"name":"St John\u2019s Institute of Dermatology, Guy\u2019s and St. Thomas\u2019 NHS Foundation Trust, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sam","family":"Norton","sequence":"additional","affiliation":[{"name":"Health Psychology Section, Institute of Psychiatry, Psychology & Neuroscience, King\u2019s College London, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lesley","family":"Foster","sequence":"additional","affiliation":[{"name":"St John\u2019s Institute of Dermatology, Guy\u2019s and St. Thomas\u2019 NHS Foundation Trust, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Myfanwy","family":"Morgan","sequence":"additional","affiliation":[{"name":"Institute of Pharmaceutical Science, King's College London, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kirby","family":"Sainsbury","sequence":"additional","affiliation":[{"name":"Institute of Health & Society, Faculty of Medical Science, Newcastle University, Newcastle, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Vera","family":"Ara\u00fajo-Soares","sequence":"additional","affiliation":[{"name":"Institute of Health & Society, Faculty of Medical Science, Newcastle University, Newcastle, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rebecca","family":"Anderson","sequence":"additional","affiliation":[{"name":"Institute of Pharmaceutical Science, King's College London, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Isabel","family":"Garrood","sequence":"additional","affiliation":[{"name":"Newcomen Centre, Guy\u2019s and St. Thomas\u2019 NHS Foundation Trust, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jakob","family":"Heydenreich","sequence":"additional","affiliation":[{"name":"Department of Dermatology, Bispebjerg Hospital, Copenhagen, Denmark"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Falko F","family":"Sniehotta","sequence":"additional","affiliation":[{"name":"Institute of Health & Society, Faculty of Medical Science, Newcastle University, Newcastle, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rute","family":"Vieira","sequence":"additional","affiliation":[{"name":"Institute of Health & Society, Faculty of Medical Science, Newcastle University, Newcastle, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Hans Christian","family":"Wulf","sequence":"additional","affiliation":[{"name":"Department of Dermatology, Bispebjerg Hospital, Copenhagen, Denmark"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"John","family":"Weinman","sequence":"additional","affiliation":[{"name":"Institute of Pharmaceutical Science, King's College London, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"239","published-online":{"date-parts":[[2017,8,21]]},"reference":[{"key":"2025121410110363000_7.8.e018364.1","doi-asserted-by":"publisher","DOI":"10.1016\/j.dnarep.2008.01.014"},{"key":"2025121410110363000_7.8.e018364.2","doi-asserted-by":"publisher","DOI":"10.1073\/pnas.1519444113"},{"key":"2025121410110363000_7.8.e018364.3","doi-asserted-by":"publisher","DOI":"10.1111\/bjd.12523"},{"key":"2025121410110363000_7.8.e018364.4","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.2010.083022"},{"key":"2025121410110363000_7.8.e018364.5","doi-asserted-by":"publisher","DOI":"10.1001\/jamadermatol.2013.5098"},{"issue":"s2","key":"2025121410110363000_7.8.e018364.6","doi-asserted-by":"crossref","first-page":"85","DOI":"10.1111\/j.1365-2133.2012.11093.x","article-title":"Photoprotection in immunocompetent and immunocompromised people","volume":"167","author":"Surber","year":"2012","journal-title":"Br J Dermatol"},{"key":"2025121410110363000_7.8.e018364.7","doi-asserted-by":"crossref","unstructured":"Haynes RB , Ackloo E , Sahota N , et al . 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