Ogunsanya M E, Brown C M, Lin D, Imarhia F, Maxey C, Chong B F
College of Pharmacy, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma.
College of Pharmacy, The University of Texas at Austin, Texas.
Int J Womens Dermatol. 2018 Apr 13;4(3):152-158. doi: 10.1016/j.ijwd.2018.01.002. eCollection 2018 Sep.
Cutaneous lupus erythematosus (CLE) is a rare dermatologic autoimmune disease marked by photosensitive lesions that can vary in appearance depending on the subtype. The extent to which CLE affects a patient's quality of life (QoL) has not been fully characterized. Focus groups were conducted to explore patients' perspectives of how CLE has affected their lives and to understand the unmet needs in regards to CLE treatment and care.
This qualitative study involved three focus groups with a total of 19 patients with CLE. A moderator guide containing open-ended questions was used to assess how CLE affects overall QoL. The focus groups were audio-recorded with notetaking. Data were content-analyzed to identify emergent themes.
Four themes emerged as important to patients with CLE: disease sequelae, social interactions, functioning, and unmet needs. Most patients reported decreased QoL due to signs and symptoms such as dyspigmentation and scarring. Having CLE negatively affected patients' mental health and personal relationships and led to negative coping strategies, such as recreational drug use. Issues related to body image were also elicited by patients. Patients cited unmet needs including lack of treatments to improve chronic skin lesions of CLE and inadequate patient education on living with CLE.
Providers can look for signs of QoL impairment in patients with CLE by asking questions related to body image, mental health, social isolation, and coping mechanisms. Future QoL measures can include the effect of CLE-specific attributes such as scarring and dyspigmentation to empower patients' voices in determining therapeutic efficacy in future clinical trials. Findings from our study have added a new understanding of daily experiences that were elicited directly from patients with CLE.
皮肤型红斑狼疮（CLE）是一种罕见的皮肤自身免疫性疾病，其特征为光敏性皮损，外观因亚型而异。CLE对患者生活质量（QoL）的影响程度尚未完全明确。开展焦点小组讨论以探讨患者对CLE如何影响其生活的看法，并了解CLE治疗和护理方面未满足的需求。
这项定性研究包括三个焦点小组，共有19名CLE患者参与。使用包含开放式问题的主持人指南来评估CLE如何影响总体生活质量。焦点小组讨论进行了录音并做了笔记。对数据进行内容分析以确定新出现的主题。
对于CLE患者而言，有四个主题显得很重要：疾病后遗症、社交互动、功能状况和未满足的需求。大多数患者报告称，由于色素沉着和瘢痕等体征和症状，生活质量下降。患有CLE对患者的心理健康和人际关系产生负面影响，并导致消极的应对策略，如使用消遣性药物。患者还提到了与身体形象有关的问题。患者指出了未满足的需求，包括缺乏改善CLE慢性皮肤病变的治疗方法以及关于CLE患者生活的患者教育不足。
医疗服务提供者可以通过询问与身体形象、心理健康、社会隔离和应对机制相关的问题，来寻找CLE患者生活质量受损的迹象。未来的生活质量衡量标准可以包括CLE特定属性（如瘢痕和色素沉着）的影响，以便在未来的临床试验中增强患者在确定治疗效果方面的话语权。我们研究的结果为直接来自CLE患者的日常经历增添了新的认识。
