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“DLQI 似乎是‘行动’,而 Skindex-29 似乎是‘情感’”:对两种常见皮肤病生活质量测量工具的患者感知的定性研究。

"DLQI Seems to be 'Action', and Skindex-29 Seems to be 'Emotion'": Qualitative Study of the Perceptions of Patients with Psoriasis or Eczema on Two Common Dermatology-specific Quality of Life Measures.

机构信息

Institute of Social Medicine and Health Systems Research, Otto von Guericke University Magdeburg, Leipziger Str. 44, DE-39120 Magdeburg, Germany.

出版信息

Acta Derm Venereol. 2020 Apr 6;100(8):adv00105. doi: 10.2340/00015555-3417.

Abstract

Little is known about which quality of life measure best captures the lived experience of people with a chronic skin condition. The purpose of this study was to explore patients' views on the Dermatology Life Quality Index (DLQI) and Skindex-29. Participants were adults (n = 28) with a diagnosis of eczema or psoriasis who completed the DLQI and the Skindex-29 before being interviewed about the content and format of these questionnaires. Interviews were analysed using content analysis. Participants were generally satisfied with length and layout of both questionnaires. However, the majority preferred the Skindex-29 for its ease of understanding, use of a longer recall period and incorporation of items on a variety of emotions. Participants reported both questionnaires failing to incorporate important aspects of their lives, for instance impact on professional relationships. Participants voiced limitations in both measures but overall felt Skindex-29 better captured their lived experience.

摘要

人们对哪些生活质量衡量标准最能捕捉到患有慢性皮肤疾病的人的生活体验知之甚少。本研究的目的是探讨患者对皮肤病生活质量指数(DLQI)和 Skindex-29 的看法。参与者为患有湿疹或银屑病的成年人(n=28),他们在接受关于这些问卷的内容和格式的访谈之前完成了 DLQI 和 Skindex-29。访谈使用内容分析法进行分析。参与者通常对这两个问卷的长度和布局感到满意。然而,大多数人更喜欢 Skindex-29,因为它易于理解,使用更长的回忆期,并纳入了各种情绪的项目。参与者报告说,这两个问卷都没有纳入他们生活的重要方面,例如对职业关系的影响。参与者对这两种测量方法都提出了限制,但总体上认为 Skindex-29 更好地捕捉了他们的生活体验。

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