中华皮肤科杂志 ›› 2025, Vol. 58 ›› Issue (7): 608-612.doi: 10.35541/cjd.20240277

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白癜风患者家庭光疗实施及管理需求调查分析

李昱1    王紫薇2    叶容嘉1    李容3    朱艳1    张小华1    黄丹1    鞠梅1   

  1. 1北京协和医学院  中国医学科学院皮肤病医院 皮肤病研究所，南京  210042；2徐州市中心医院皮肤科，徐州 221000；3福建医科大学附属协和医院皮肤科，福州  350001
    李昱与王紫薇对本文有同等贡献

  • 收稿日期:2024-05-21 修回日期:2025-05-13 发布日期:2025-07-03
  • 通讯作者: 李昱 E-mail:lyliyu1119@163.com
  • 基金资助:
    中国研究型医院学会科研项目（Y2021FH-PFK06）

Home-based phototherapy implementation and management needs in patients with vitiligo: a questionnaire survey analysis

Li Yu1, Wang Ziwei2, Ye Rongjia1, Li Rong3, Zhu Yan1, Zhang Xiaohua1, Huang Dan1, Ju Mei1   

  1. 1Hospital for Skin Diseases, Institute of Dermatology, Chinese Academy of Medical Sciences ＆ Peking Union Medical College, Nanjing 210042, China; 2Department of Dermatology, Xuzhou Central Hospital, Xuzhou 221000, Jiangsu, China; 3Department of Dermatology, Fujian Medical University Union Hospital, Fuzhou 350001, China
    Li Yu and Wang Ziwei contributed equally to this article
  • Received:2024-05-21 Revised:2025-05-13 Published:2025-07-03
  • Contact: Li Yu E-mail:lyliyu1119@163.com
  • Supported by:
    Research Projects of Chinese Research Hospital Association（Y2021FH-PFK06）

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摘要： 【摘要】 目的 调查家庭光疗（HBPT）在白癜风患者中的实施情况，分析HBPT的患者管理需求。方法 以问卷形式调查2021年12月至2022年11月期间就诊于中国医学科学院皮肤病医院门诊的白癜风患者的HBPT使用情况，对白癜风患者HBPT普及方面、使用情况及管理需求进行调查分析。结果 共收集496份合格问卷，纳入白癜风患者496例，其中男241例（48.5%），女255例（51.5%）；就诊年龄2 ~ 67（30.87 ± 12.36）岁；皮损累及部位以头面部最为常见（52.2%），其余依次为毛发（32.1%）、手足肢端（31.4%）、躯干（30.2%）、四肢（24.3%）、颈部（19.5%）及会阴部（9.9%）。320例（64.5%）正在或曾经使用HBPT，352例（70.8%）愿进一步学习HBPT相关使用指导与健康教育。HBPT使用后皮损的复色情况：312例患者中54例（17.3%）报告痊愈，64例（20.5%）显效，142例（45.5%）好转，52例（16.7%）无效。223例（71.5%）发生过不良反应，其中28例（9.0%）不良反应为重度。患者最希望得到的指导信息为光疗剂量及疗程的调整方式（184/352，52.3%）；获取健康教育信息最有效的方式是医务人员口头教育（177/352，50.3%）。结论 愿意接受和使用HBPT的白癜风患者最希望得到的指导信息为光疗剂量及疗程的调整方式，信息获取主要来自医务人员口头健康教育。

关键词: 白癜风, 光疗法, 疾病管理, 家庭光疗, 调查和问卷

Abstract: 【Abstract】 Objective To investigate the current status of the implementation of home-based phototherapy （HBPT） in patients with vitiligo, and to analyze management needs among patients receiving HBPT. Methods A questionnaire survey was conducted on the application of HBPT among patients with vitiligo who visited the outpatient clinic of the Hospital for Skin Diseases, Chinese Academy of Medical Sciences from December 2021 to November 2022. Additionally, the popularization and usage of HBPT as well as needs of patient management were investigated and analyzed in these vitiligo patients. Results A total of 496 valid questionnaires were collected from 496 patients with vitiligo （241 males ［48.5%］ and 255 females ［51.5%］）. Their ages at visit ranged from 2 to 67 （30.87 ± 12.36） years. The most commonly affected sites were the head and face （52.2%）, followed by hair （32.1%）, hands and feet （31.4%）, trunk （30.2%）, limbs （24.3%）, neck （19.5%）, and perineum （9.9%）. Among the participants, 320 （64.5%） were currently using or had used HBPT, and 352 （70.8%） expressed a willingness to learn more about HBPT usage guidelines and health education. Regarding the repigmentation outcomes after HBPT: among 312 patients, 54 （17.3%） reported complete recovery, 64 （20.5%） were markedly improved, 142 （45.5%） experienced improvement, and 52 （16.7%） showed no response. Adverse reactions occurred in 223 patients （71.5%）, of whom 28 （9.0%） experienced severe adverse reactions. The most desired guiding information was the adjustment method for phototherapy dosage and treatment duration （184/352, 52.3%）; the most effective way to receive health education information was through verbal education by medical staff （177/352, 50.3%）. Conclusion For vitiligo patients who were willing to accept and use HBPT, the most desired guiding information was the adjustment method for phototherapy dosage and treatment duration, and verbal health education by medical staff appeared to be the main way to obtain health education information.

Key words: Vitiligo, Phototherapy, Disease management, Home-based phototherapy, Surveys and questionnaires

引用本文

李昱 王紫薇 叶容嘉 李容 朱艳 张小华 黄丹 鞠梅. 白癜风患者家庭光疗实施及管理需求调查分析[J]. 中华皮肤科杂志, 2025,58(7):608-612. doi:10.35541/cjd.20240277

Li Yu, Wang Ziwei, Ye Rongjia, Li Rong, Zhu Yan, Zhang Xiaohua, Huang Dan, Ju Mei. Home-based phototherapy implementation and management needs in patients with vitiligo: a questionnaire survey analysis[J]. Chinese Journal of Dermatology, 2025, 58(7): 608-612.doi:10.35541/cjd.20240277