化脓性汗腺炎生活质量测量方法的开发。
Development of a Quality-of-Life Measure for Hidradenitis Suppurativa.
作者信息
Sisic Mia, Kirby Joslyn S, Boyal Sanwarjit, Plant Lisa, McLellan Chelsea, Tan Jerry
机构信息
1 Department of Psychology, University of Windsor, Windsor, Ontario, Canada.
2 Penn State Hershey Dermatology, Hershey, PA, USA.
出版信息
J Cutan Med Surg. 2017 Mar/Apr;21(2):152-155. doi: 10.1177/1203475416677721. Epub 2016 Nov 12.
BACKGROUND
Hidradenitis suppurativa (HS) is a chronic skin disorder with adverse impacts on both physical and psychosocial well-being. There is presently no validated HS-specific quality-of-life (QoL) measure.
OBJECTIVE
The objective of this study is to develop a QoL instrument for HS (HS-QoL) in accordance with recommended standards.
METHODS
Patient interviews (concept elicitation) and expert input were used to develop the conceptual framework for outcomes perceived important to patients with HS. A HS-QoL-v1 measure was developed, and cognitive interviews with patients were conducted for pilot testing.
RESULTS
Concept elicitation interviews with patients with HS (n = 21) generated 12 themes. Most frequently reported were impacts on daily activities and symptoms due to HS. These themes, along with literature review and input from clinical experts, informed development of the HS-QoL-v1. Nine cognitive interviews were conducted in a pilot test and resulted in the HS-QoL-v2 measure.
CONCLUSION
The HS-QoL-v2 is a preliminary QoL instrument for which further psychometric validation and establishment of clinimetric properties will be undertaken.
背景
化脓性汗腺炎（HS）是一种慢性皮肤疾病，对身体和心理社会健康均有不利影响。目前尚无经过验证的针对HS的特定生活质量（QoL）测量方法。
目的
本研究的目的是根据推荐标准开发一种用于HS的生活质量工具（HS-QoL）。
方法
采用患者访谈（概念引出）和专家意见来构建对HS患者而言重要结局的概念框架。开发了HS-QoL-v1测量方法，并对患者进行认知访谈以进行预试验。
结果
对HS患者（n = 21）进行的概念引出访谈产生了12个主题。最常报告的是HS对日常活动和症状的影响。这些主题，连同文献综述和临床专家的意见，为HS-QoL-v1的开发提供了依据。在预试验中进行了9次认知访谈，得出了HS-QoL-v2测量方法。
结论
HS-QoL-v2是一种初步的生活质量工具，将对其进行进一步的心理测量学验证和临床测量特性的确立。
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