一种个性化且系统设计的依从性干预措施可改善色素性干皮病（XP）成人患者的光防护：XPAND随机对照试验的结果

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

作者信息

Walburn Jessica, Norton Sam, Sarkany Robert, Canfield Martha, Sainsbury Kirby, McCrone Paul, Araújo-Soares Vera, Morgan Myfanwy, Boadu Janette, Foster Lesley, Heydenreich Jakob, Mander Adrian P, Sniehotta Falko F, Wulf Hans Christian, Weinman John

机构信息

School of Cancer and Pharmaceutical Sciences, Faculty of Life Sciences & Medicine, King's College London, London, UK.

出版信息

Br J Dermatol. 2025 Mar 18;192(4):728-737. doi: 10.1093/bjd/ljae393.

DOI:10.1093/bjd/ljae393

PMID:39401796

Abstract

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.

摘要

背景

由于皮肤癌，着色性干皮病（XP）患者对光保护的依从性差会增加发病率并缩短寿命。

目的

测试一种高度个性化的干预措施（XPAND），以减少XP成年患者面部所接受的紫外线辐射（UVR）剂量，该措施是根据已知的光保护依从性差的社会心理决定因素设计的。

方法

一项双臂平行组随机对照试验，纳入光保护措施欠佳的患者，分为接受XPAND组或延迟干预对照组，后者于次年接受XPAND。XPAND包括七个一对一的疗程，针对光保护障碍（如对UVR的误解），辅以个性化短信、活动表和包含行为改变技巧的教育材料。主要结局是通过将手腕处的UVR暴露量与面部光保护活动日记相结合，计算2018年6月至7月期间21天内面部的平均每日UVR剂量。次要结局包括2018年8月21天内面部的UVR剂量、户外活动时间、户外使用的光保护措施、情绪、光保护的自主性和信心。计算了财务成本和质量调整生命年（QALY）。

结果

16例患者被随机分组；13例提供了足够的数据用于主要结局分析。在2018年6月的评估中，XPAND组（n = 8）面部的平均每日UVR剂量较低[差异标准误（SED）为0.03（标准差0.02）]，而对照组（n = 7）为[0.43 SED（标准差0.17）]（调整后差异=-0.25，P < 0.001，Hedge's g = 2.21）。在户外活动时间、户外光保护、情绪或信心方面，未观察到显著的组间差异。延迟干预对照组在接受XPAND后（2019年6月评估），面部UVR剂量（调整后差异=-0.05；Hedge's g = -0.1）、户外活动时间（调整后差异=-69.9；Hedge's g = -0.28）和光保护（调整后差异=-0.23，Hedge's g = 0.45）均有改善。XPAND与较低的治疗成本[-2642英镑；95%置信区间（CI）-8715至3873英镑]和较少的QALY（-0.0141；95%CI -0.0369至0.0028）相关。