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主观幸福感对患者有多重要?一项针对银屑病患者的定性访谈研究。

How important is subjective well-being for patients? A qualitative interview study of people with psoriasis.

机构信息

Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany.

Department of Dermatology and Allergology, Specialized Hospital Bad Bentheim, Bad Bentheim, Germany.

出版信息

Qual Life Res. 2022 Dec;31(12):3355-3363. doi: 10.1007/s11136-022-03189-w. Epub 2022 Aug 10.

Abstract

PURPOSE

This qualitative study aimed to investigate the importance of subjective well-being (SWB) as an outcome of psoriasis treatment from patient's perspective. We focused on the affective component of SWB as assessed with the Daily Experience Sampling Questionnaire (DESQ), a validated daily diary.

METHODS

Semi-structured qualitative telephone interviews were conducted with in-patients of a dermatological rehabilitation clinic, after participants had completed the DESQ for up to seven days to get familiar with the concept of SWB. Patients were asked to reflect on the importance of SWB as treatment goal and on its relative importance as compared with other treatment outcomes. We also addressed whether SWB could be an indirect measure of benefit in that it reflects other important outcomes. Transcripts were analyzed using content analysis.

RESULTS

Eleven patients participated (24-63 years, mean 53 years, 8 male, 3 female). Participants uniformly confirmed that changes in SWB reflected treatment benefit. All but one considered SWB to be a central aspect of treatment benefit-either as the most important treatment goal or as an indirect benefit indicator. In particular, participants described positive associations of SWB with other outcomes, such as symptoms. They reported that both the disease and the medical treatment had an impact on their SWB, which was reflected in the DESQ.

CONCLUSION

Our findings suggest that SWB is a relevant indicator of treatment benefit for patients with psoriasis. Therefore, SWB measures, such as the DESQ, could be used to operationalize patient-relevant benefit of psoriasis treatment, complementing outcome measures currently used.

摘要

目的

本定性研究旨在从患者角度探讨主观幸福感(SWB)作为银屑病治疗结果的重要性。我们专注于 SWB 的情感成分,使用经过验证的日常日记 Daily Experience Sampling Questionnaire(DESQ)进行评估。

方法

在参与者使用 DESQ 完成长达七天的时间以熟悉 SWB 概念后,对皮肤科康复诊所的住院患者进行了半结构化的定性电话访谈。要求患者思考 SWB 作为治疗目标的重要性及其与其他治疗结果的相对重要性。我们还探讨了 SWB 是否可以作为受益的间接衡量标准,因为它反映了其他重要结果。使用内容分析对转录本进行分析。

结果

共有 11 名患者参与(24-63 岁,平均 53 岁,男性 8 名,女性 3 名)。所有参与者一致确认 SWB 的变化反映了治疗的益处。除一人外,所有人都认为 SWB 是治疗益处的核心方面之一——无论是作为最重要的治疗目标还是作为间接受益指标。特别是,参与者描述了 SWB 与其他结果(如症状)之间的积极关联。他们报告说,疾病和医疗都对他们的 SWB 产生了影响,这反映在 DESQ 中。

结论

我们的研究结果表明,SWB 是银屑病患者治疗获益的一个相关指标。因此,SWB 测量方法(如 DESQ)可用于将患者相关的银屑病治疗获益操作性化,补充目前使用的结果测量方法。

相似文献

本文引用的文献

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Psychological parameters of psoriasis.银屑病的心理参数。
Psychiatriki. 2017 Jan-Mar;28(1):54-59. doi: 10.22365/jpsych.2017.281.54.

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