Department of Rheumatology, Middlemore Hospital, Counties Manukau District Health Board, Auckland, New Zealand.
J Clin Rheumatol. 2011 Jan;17(1):1-6. doi: 10.1097/RHU.0b013e318204a8f9.
Gout is commonly undertreated and can lead to significant disability. Few data are available about the lived experience of gout or the barriers to effective urate-lowering therapy in men with gout.
This study aims to understand the experience of men living with chronic gout using a qualitative grounded theory approach.
Eleven English-speaking men with chronic gout participated in an in-depth semistructured interview about their experiences of living with gout. Interviews were recorded and transcribed. Consensus groups were used to analyze and validate the themes arising from the transcripts.
Three major themes related to the experience of gout emerged from the interviews: the impact of disease (pain, dependency on family members during flares, isolation, work disability), the progressiveness of untreated gout (increasing number of affected joints and frequency of flares, increase in food type triggers, escalating treatment required to control flares due to reducing efficacy of anti-inflammatory medication), and the lack of knowledge of gout (a community wide lack of understanding of the causes or prevention of gout, stoicism/tolerance to symptoms and disability, personal and social stigma related to gout).
Chronic gout has an important impact on both the patient and his family. This work provides previously hidden perspectives of the experience of gout, which may be generalized to other men with gout, suggesting that shame, embarrassment, and stigma lead to trivialization of the impact of disease despite its severity. These experiences may lead to undertreatment of gout because of lack of disclosure of symptom severity and lack of expectation of treatment effectiveness, which in turn could contribute to the development of progressive gout.
痛风常治疗不足，可导致严重残疾。关于痛风患者的真实体验，或降尿酸治疗的障碍，相关数据有限。
本研究旨在采用定性扎根理论方法了解男性痛风患者的生活体验。
11 名患有慢性痛风的英语使用者参与了关于其痛风生活体验的深入半结构式访谈。访谈进行录音并转录。共识小组用于分析和验证从转录本中出现的主题。
访谈中出现了三个与痛风体验相关的主要主题：疾病的影响（疼痛、发作时对家庭成员的依赖、孤立、工作能力丧失）、未经治疗的痛风的进展（受影响关节的数量和发作频率增加、触发食物类型增加、由于抗炎药物疗效降低而需要增加控制发作的治疗），以及对痛风缺乏了解（对痛风的病因或预防缺乏社区广泛的了解、对症状和残疾的冷漠/容忍、与痛风相关的个人和社会耻辱）。
慢性痛风对患者及其家庭都有重要影响。这项工作提供了痛风体验的先前隐藏视角，可能推广到其他男性痛风患者，表明尽管疾病严重，但羞耻、尴尬和耻辱感导致对疾病影响的轻视。这些体验可能导致痛风治疗不足，因为症状严重程度的披露不足，以及对治疗效果的期望不足，这反过来又可能导致痛风的进展。
