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A personalized and systematically designed adherence intervention improves photoprotection in adults with xeroderma pigmentosum (XP): results of the XPAND randomized controlled trial

Lookup NU author(s): Dr Kirby Sainsbury

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This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


Abstract

© The Author(s) 2024. Published by Oxford University Press on behalf of British Association of Dermatologists.Background Poor adherence to photoprotection in xeroderma pigmentosum (XP) increases morbidity and shortens lifespan due to skin cancers. Objectives To test a highly personalized intervention (XPAND) to reduce the dose of ultraviolet radiation (UVR) reaching the face in adults with XP, designed using known psychosocial determinants of poor photoprotection. Methods A two-arm parallel group randomized controlled trial, including patients with suboptimal photoprotection to receive XPAND or a delayed-intervention control arm that received XPAND the following year. XPAND comprises seven 1 : 1 sessions targeting photoprotection barriers (e.g. misconceptions about UVR) supported by personalized text messages, activity sheets and educational materials incorporating behaviour change techniques. The primary outcome, mean daily UVR dose to face across 21 days in June–July 2018, was calculated by combining UVR exposure at the wrist with a face photoprotection activity diary. Secondary outcomes were UVR dose to face across 21 days in August 2018, time spent outside, photoprotective measures used outside, mood, automaticity and confidence to photoprotect. Financial costs and quality-adjusted life years (QALYs) were calculated. Results Sixteen patients were randomized; 13 provided sufficient data for primary outcome analysis. The XPAND group (n = 8) had lower mean daily UVR dose to face [0.03 standard error of difference (SED) (SD 0.02)] compared with controls (n = 7) [0.43 SED (SD 0.17)] (adjusted difference = –0.25, P < 0.001, Hedge’s g = 2.21) at the June 2018 assessment. No significant between-group differences were observed in time spent outside, photoprotection outside, mood or confidence. The delayed-intervention control showed improvements in UVR dose to face (adjusted difference = –0.05; Hedge’s g = –0.1), time outside (adjusted difference = –69.9; Hedge’s g = –0.28) and photoprotection (adjusted difference = –0.23, Hedge’s g = 0.45) after receiving XPAND (June 2019 assessment). XPAND was associated with lower treatment costs [–£2642; 95% confidence interval (CI) –£8715 to £3873] and fewer QALYs (–0.0141; 95% CI –0.0369 to 0.0028). Conclusions XPAND was associated with a lower UVR dose to face in patients with XP and was cost-effective.


Publication metadata

Author(s): Walburn J, Norton S, Sarkany R, Canfield M, Sainsbury K, McCrone P, Araujo-Soares V, Morgan M, Boadu J, Foster L, Heydenreich J, Mander AP, Sniehotta FF, Wulf HC, Weinman J

Publication type: Article

Publication status: Published

Journal: British Journal of Dermatology

Year: 2025

Volume: 192

Issue: 4

Pages: 728-737

Print publication date: 01/04/2025

Online publication date: 15/10/2024

Acceptance date: 07/10/2024

Date deposited: 08/04/2025

ISSN (print): 0007-0963

ISSN (electronic): 1365-2133

Publisher: Oxford University Press

URL: https://doi.org/10.1093/bjd/ljae393

DOI: 10.1093/bjd/ljae393

Data Access Statement: The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions

PubMed id: 39401796


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Funding

Funder referenceFunder name
e National Institute for Health and Care Research (NIHR)
Programme Grants for Applied Research (RP-PG-1212 20009)

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