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疼痛在银屑病患者生活中的作用:一项关于未得到充分关注症状的定性研究。

The Role of Pain in the Lives of Patients with Psoriasis: A Qualitative Study on an Inadequately Addressed Symptom.

作者信息

Snyder Ashley M, Taliercio Vanina L, Webber Lisa B, Brandenberger Adelheid U, Rich Bianca E, Beshay Abram P, Biber Joshua E, Hess Rachel, Rhoads Jamie L W, Secrest Aaron M

机构信息

Department of Dermatology, University of Utah, Salt Lake City, UT, USA.

Department of Population Health Sciences, University of Utah, Salt Lake City, UT, USA.

出版信息

J Psoriasis Psoriatic Arthritis. 2022 Jan;7(1):29-34. doi: 10.1177/24755303211066928. Epub 2021 Dec 12.

Abstract

Patients with psoriasis commonly report experiencing severe sensory symptoms, and the burden of these symptoms can extend beyond unpleasant experiences to impair patients' health-related quality of life (HRQL). However, the symptom of pain and its consequences are still poorly understood in psoriasis patients. To understand the quality and intensity of pain associated with psoriasis as well as its interference with daily function in patients with psoriasis. Three focus groups and four interviews with psoriasis patients were conducted (n = 25). A trained facilitator used a semi-structured interview guide based on a literature review and a theory-driven approach. Two researchers independently coded the narratives and reached a consensus on the major themes using NVivo 12 software. Our analysis produced five main themes regarding pain. (1) Perception of pain was illustrated through intense descriptors. (2) Patients identified pain triggers, including self-inflicted triggers. (3) Patients found coping strategies to deal with pain, including suppression of sensory experience. (4) Emotional suffering was linked primarily to the compulsion to continue scratching despite repeated efforts to stop and the failure of physicians to acknowledge the burden of the pain, which led to inadequate pain management. (5) Pain led to an overt impact on HRQL in these patients through interference with daily activity, intimate relationships, and sleep. Pain can be a significant hardship for patients with psoriasis. We encourage clinicians to inquire about pain separate from pruritus and to consider HRQL impacts of their patients' pain when determining treatments.

摘要

银屑病患者普遍报告有严重的感觉症状,这些症状的负担不仅会带来不愉快的体验,还会损害患者的健康相关生活质量(HRQL)。然而,银屑病患者的疼痛症状及其后果仍未得到充分了解。为了了解与银屑病相关的疼痛的性质和强度,以及它对银屑病患者日常功能的干扰。我们对银屑病患者进行了三个焦点小组讨论和四次访谈(n = 25)。一名经过培训的主持人使用了基于文献综述和理论驱动方法的半结构化访谈指南。两名研究人员独立对叙述进行编码,并使用NVivo 12软件就主要主题达成共识。我们的分析产生了关于疼痛的五个主要主题。(1)通过强烈的描述词说明了对疼痛的感知。(2)患者确定了疼痛触发因素,包括自我造成的触发因素。(3)患者找到了应对疼痛的策略,包括抑制感觉体验。(4)情感痛苦主要与尽管多次努力停止但仍继续搔抓的强迫行为以及医生未能认识到疼痛负担有关,这导致了疼痛管理不足。(5)疼痛通过干扰日常活动、亲密关系和睡眠,对这些患者的HRQL产生了明显影响。疼痛对银屑病患者来说可能是一个重大的困难。我们鼓励临床医生在询问瘙痒之外询问疼痛情况,并在确定治疗方案时考虑患者疼痛对HRQL的影响。

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