Plázár Dóra, Metyovinyi Zseraldin, Medvecz Márta, Rencz Fanni
Department of Dermatology, Venereology and Dermatooncology, Semmelweis University, 41 Mária Street, Budapest, Hungary, 1085.
Department of Health Policy, Corvinus University of Budapest, 8 Fővám Square, Budapest, Hungary, 1093.
Qual Life Res. 2025 Apr;34(4):977-989. doi: 10.1007/s11136-024-03871-1. Epub 2024 Dec 20.
Limited evidence is available about the content validity of the EQ-5D-5L in rare skin fragility disorders. Previous research has demonstrated that the skin irritation and self-confidence additional dimensions (bolt-ons) improve the content validity of the EQ-5D-5L in psoriasis and atopic dermatitis. Our aim was to investigate the content validity of the EQ-5D-5L and the two bolt-ons in Darier's disease and Hailey-Hailey disease.
In 2023, we conducted qualitative, semi-structured interviews with 15 adult patients at a university dermatology clinic. Patients completed the EQ-5D-5L with two bolt-ons using a think-aloud technique. We used probing questions to explore the relevance, comprehensiveness and comprehensibility. Thematic analysis was applied to analyze the transcripts from the interviews.
Most patients found both the EQ-5D-5L and the two bolt-ons comprehensible and relevant to their disease. All patients preferred the EQ-5D-5L with the two bolt-ons over the EQ-5D-5L alone. Twelve potential missing concepts were identified after the EQ-5D-5L + bolt-ons, but only financial impact and sex life were identified by more than one patient. Only one patient reported a conceptual overlap between the skin irritation bolt-on and the pain/discomfort dimension.
Our findings suggest that there is no actionable evidence indicating gaps in the content validity of the EQ-5D-5L with two bolt-ons in Darier's and Hailey-Hailey disease. Future studies are encouraged to conduct quantitative psychometric testing of the bolt-ons in this and other chronic dermatological patient populations.
关于EQ-5D-5L在罕见皮肤脆性疾病中的内容效度，现有证据有限。先前的研究表明，皮肤刺激和自信心附加维度（附加项）提高了EQ-5D-5L在银屑病和特应性皮炎中的内容效度。我们的目的是研究EQ-5D-5L以及这两个附加项在 Darier病和Hailey-Hailey病中的内容效度。
2023年，我们在一家大学皮肤科诊所对15名成年患者进行了定性的半结构化访谈。患者采用出声思维技术完成了带有两个附加项的EQ-5D-5L。我们使用追问问题来探讨其相关性、全面性和可理解性。采用主题分析法对访谈记录进行分析。
大多数患者认为EQ-5D-5L和这两个附加项都易于理解且与他们的疾病相关。所有患者都更喜欢带有两个附加项的EQ-5D-5L，而不是单独的EQ-5D-5L。在EQ-5D-5L +附加项之后，识别出了12个潜在的遗漏概念，但只有财务影响和性生活被不止一名患者提及。只有一名患者报告了皮肤刺激附加项与疼痛/不适维度之间存在概念重叠。
我们的研究结果表明，没有可采取行动的证据表明在Darier病和Hailey-Hailey病中，带有两个附加项的EQ-5D-5L在内容效度上存在差距。鼓励未来的研究对这一附加项以及其他慢性皮肤病患者群体进行定量心理测量测试。
