Tizek Lu, Tizek Li, Schneider S, Wecker H, Welzel J, Biedermann T, Zink A
School of Medicine, Department of Dermatology and Allergy, Technical University of Munich, Munich, Germany.
Clinic for Dermatology and Allergology, University Hospital Augsburg, Augsburg, Germany.
J Eur Acad Dermatol Venereol. 2025 Feb;39(2):322-330. doi: 10.1111/jdv.20268. Epub 2024 Aug 1.
Atopic dermatitis (AD), which can significantly impact quality of life, is a complex, heterogeneous skin disease affecting all ages and therefore can lead to very different patient journeys. Understanding the patient journey within the healthcare system is essential for improving care outcomes.
To explore the patient journey of individuals with AD in Germany, with a specific focus on the utilization of Internet resources throughout this process.
A cross-sectional study using a self-administered questionnaire was conducted from June 2021 to February 2022. Participants were recruited from dermatology private practices, a university hospital and online platforms.
The study included 276 participants (62.3% female; mean age: 46.3 ± 18.4 years; mean disease duration: 26.9 ± 17.5 years; mean DLQ Index: 10.0 ± 5.6). Around 191 participants were currently receiving medical treatment, with 9.1% receiving biologic therapy. Most of the people initially contacted a GP (42.4%) and were diagnosed by a dermatologist first (57.6%). Around 47.1% were currently in treatment by a dermatologist, seeking dermatological care on average 4.5 times a year. Almost all individuals (86.2%) have already consulted more than one physician during their patient journey. Overall, participants consulted a median of five physicians, while those with severe AD consulted a median of six physicians. Initial symptoms to diagnosis and between consulting two different physicians both had a median duration of 6 months. Dissatisfaction with treatment outcomes emerged as a common reason for changing physicians. Approximately 76.4% of participants used the Internet for disease-related information, primarily relying on Google. Overall, 63% found the information quality unsatisfactory.
The study underlines the widespread utilization of medical treatment and the proactive healthcare-seeking behaviour during a long patient journey. Dissatisfaction with treatment outcomes, alternative medicine and the quality of the Internet sources emphasize the potential for improving the comprehensive disease management to improve care outcomes.
特应性皮炎(AD)是一种复杂的异质性皮肤病,可显著影响生活质量,影响所有年龄段的人群,因此会导致截然不同的患者就医历程。了解医疗系统中的患者就医历程对于改善治疗效果至关重要。
探索德国特应性皮炎患者的就医历程,特别关注这一过程中互联网资源的利用情况。
于2021年6月至2022年2月进行了一项采用自填式问卷的横断面研究。参与者从皮肤科私人诊所、大学医院和在线平台招募。
该研究纳入了276名参与者(女性占62.3%;平均年龄:46.3±18.4岁;平均病程:26.9±17.5年;平均皮肤病生活质量指数:10.0±5.6)。约191名参与者目前正在接受治疗,其中9.1%接受生物治疗。大多数人最初联系的是全科医生(42.4%),首次诊断由皮肤科医生完成(57.6%)。约47.1%的人目前由皮肤科医生治疗,平均每年寻求皮肤科护理4.5次。几乎所有个体(86.2%)在就医过程中都咨询过不止一位医生。总体而言,参与者咨询医生的中位数为5位,而重度AD患者咨询医生的中位数为6位。从出现初始症状到确诊以及咨询两位不同医生之间的时间中位数均为6个月。对治疗效果不满意是更换医生的常见原因。约76.4%的参与者使用互联网获取疾病相关信息,主要依赖谷歌。总体而言,63%的人认为信息质量不尽人意。
该研究强调了在漫长的患者就医过程中广泛使用医疗治疗以及积极寻求医疗服务的行为。对治疗效果的不满、替代医学以及互联网资源的质量凸显了改善综合疾病管理以提高治疗效果的潜力。