Faculty of Medical and Health Sciences, The University of Auckland, Private Bag 92019, Auckland, 1142, New Zealand.
Department of Medicine, University of Otago, PO Box 7343, Wellington South 6242, New Zealand.
Semin Arthritis Rheum. 2020 Aug;50(4):805-811. doi: 10.1016/j.semarthrit.2020.06.001. Epub 2020 Jun 9.
Gout flares are an important concern for people with gout and an understanding of patients' experiences with gout flares is central in developing meaningful outcome measures for clinical trials. This study aimed to systematically review and thematically synthesize the qualitative literature reporting the patient experience of gout flares, to inform the development of flare-specific outcome measures.
MEDLINE, EMBASE, CINAHL Plus and PsycINFO electronic databases were searched in October 2019 to identify original qualitative research articles reporting on the patient experience of gout flares. Methodological quality of all included papers was assessed using the Critical Appraisal Skills Program (CASP) tool. Following data extraction, coding and synthesis was undertaken using reflexive thematic analysis.
Sixteen papers reporting the patient experience of gout flares were included. The majority of CASP criteria were met by most studies, indicating good methodological quality. Four predominant and overlapping themes were identified from the thematic analysis: gout flare characteristics (pain, swelling, location, duration and frequency); impact on function and activities of daily living (walking, housework and yard work, self-care, exercise and sports, driving, sleep); effects on social and family life (social participation, inability to plan, employment, dependency, relationships, intimacy); and psychological impact (boredom, irritability, fear, shame and embarrassment, isolation, financial worry, depression and anxiety).
Gout flares impact many aspects of patients' lives, including physical and psychological and social and family life. The patient experience of gout flares goes beyond what is routinely measured in research settings. Measurement and reporting methods that capture these aspects of patients' experiences with gout flares would provide more meaningful outcome measures in clinical trials of flare prevention.
痛风发作是痛风患者的一个重要关注点，了解患者痛风发作的体验对于开发有意义的临床试验结局衡量指标至关重要。本研究旨在系统回顾和主题综合报告痛风发作患者体验的定性文献，为开发专门针对痛风发作的结局衡量指标提供信息。
2019 年 10 月，我们在 MEDLINE、EMBASE、CINAHL Plus 和 PsycINFO 电子数据库中进行了检索，以确定报告痛风发作患者体验的原始定性研究文章。使用批判性评估技能计划（CASP）工具评估所有纳入文献的方法学质量。在提取数据、编码和综合后，使用反思性主题分析进行分析。
纳入了 16 篇报告痛风发作患者体验的文章。大多数研究都满足了大多数 CASP 标准，表明方法学质量良好。通过主题分析确定了四个主要且重叠的主题：痛风发作特征（疼痛、肿胀、部位、持续时间和频率）；对功能和日常生活活动的影响（行走、家务和庭院工作、自我护理、锻炼和运动、驾驶、睡眠）；对社会和家庭生活的影响（社会参与、无法计划、就业、依赖、关系、亲密关系）；以及心理影响（无聊、易怒、恐惧、羞耻和尴尬、孤立、经济担忧、抑郁和焦虑）。
痛风发作会影响患者生活的许多方面，包括身体、心理、社会和家庭生活。痛风发作患者的体验超出了研究环境中常规测量的范围。测量和报告方法，捕获这些方面的患者经历的痛风发作将提供更有意义的临床试验结局衡量指标，以预防痛风发作。
