Qualitative evidence on EQ-5D-5L skin irritation and self-confidence bolt-ons in Darier's disease and Hailey-Hailey disease.

IF 3.3 3区医学 Q1 HEALTH CARE SCIENCES & SERVICES Quality of Life Research Pub Date : 2024-12-20 DOI:10.1007/s11136-024-03871-1

Dóra Plázár, Zseraldin Metyovinyi, Márta Medvecz, Fanni Rencz

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Abstract

Objectives: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

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EQ-5D-5L在达里尔病和黑利-黑利病中皮肤刺激和自信心增强的定性证据。

目的：关于EQ-5D-5L在罕见皮肤脆弱性疾病中的含量效度的证据有限。先前的研究表明，皮肤刺激和自信附加维度（螺栓）提高了EQ-5D-5L在银屑病和特应性皮炎中的含量效度。我们的目的是调查EQ-5D-5L和两个螺栓在达里尔病和黑利-黑利病的内容效度。方法：在2023年，我们对一所大学皮肤科诊所的15名成年患者进行了定性、半结构化访谈。患者使用出声思考技术完成了EQ-5D-5L测试。我们用探究性的问题来探讨相关性、全面性和可理解性。对访谈笔录进行专题分析。结果：大多数患者发现EQ-5D-5L和两个螺栓都是可理解的，与他们的疾病相关。与单独使用EQ-5D-5L相比，所有患者都更喜欢带有两个螺栓连接的EQ-5D-5L。在EQ-5D-5L +补强后，发现了12个潜在的缺失概念，但只有财务影响和性生活被不止一个患者发现。只有一名患者报告了皮肤刺激螺栓连接和疼痛/不适维度之间的概念重叠。结论：我们的研究结果表明，没有可操作的证据表明EQ-5D-5L在Darier病和Hailey-Hailey病两种螺栓上的内容效度存在差距。未来的研究被鼓励在这个和其他慢性皮肤病患者群体中进行定量的心理测量测试。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Quality of Life Research 医学-公共卫生、环境卫生与职业卫生

CiteScore

6.50

自引率

8.60%

发文量

224

审稿时长

3-8 weeks

期刊介绍： Quality of Life Research is an international, multidisciplinary journal devoted to the rapid communication of original research, theoretical articles and methodological reports related to the field of quality of life, in all the health sciences. The journal also offers editorials, literature, book and software reviews, correspondence and abstracts of conferences. Quality of life has become a prominent issue in biometry, philosophy, social science, clinical medicine, health services and outcomes research. The journal''s scope reflects the wide application of quality of life assessment and research in the biological and social sciences. All original work is subject to peer review for originality, scientific quality and relevance to a broad readership. This is an official journal of the International Society of Quality of Life Research.