目的:探索,从患者的角度来看,雷诺现象(RP)对系统性硬化症(SSc-RP)患者脚的症状和影响,并确定哪些足部相关领域对患者很重要。
方法:40名SSc-RP参与者(34名女性)参加了在英国或美国举行的六个焦点小组之一。参与者有目的地取样,以确保疾病类型的多样性,持续时间,和种族。主题指南包括关于RP影响的问题,自我管理,和治疗期望。采用定性内容分析来识别与足部特异性症状及其影响相关的数据中的关键概念。主题由具有潜在重要性的相应领域组织。
结果:28名参与者(70%)报告他们的脚经历了RP。确定了与潜在重要性领域相对应的五个主题:温度变化,疼痛,抽筋和刚度,麻木,和颜色的变化。这些问题对参与者的生活产生了负面影响,妨碍行走,驾驶,和社交,并导致鞋类和袜子问题。
结论:这项大型定性研究探索了SSc-RP患者足部的经历,确定了对患者非常重要的几个关键领域。SSc-RP在脚上很常见,以几种模式呈现,并影响患者生活的多个方面。这些发现表明,未来针对RP的足部特定干预措施可能会成为目标。这项研究的结果提高了对SSc-RP影响脚的患者的重要领域的理解,并将有助于开发风湿性和肌肉骨骼疾病中脚和踝关节疾病的核心结果集。
OBJECTIVE: To explore, from patients\' perspectives, the symptoms and impact of Raynaud\'s phenomenon (RP) on the feet of patients with systemic sclerosis (SSc-RP), and to identify which foot-related domains are important to patients.
METHODS: Forty participants (34 women) with SSc-RP took part in one of six focus groups held in the United Kingdom or United States. Participants were purposively sampled to ensure diversity in disease type, duration, and ethnicity. The topic guide included questions on RP impact, self-management, and treatment expectations. Qualitative content analysis was employed to identify key concepts in the data relating to foot-specific symptoms and their impact. Themes were organized by corresponding domains of potential importance.
RESULTS: Twenty-eight participants (70 %) reported experiencing RP in their feet. Five themes were identified corresponding to domains of potential importance: temperature changes, pain, cramping and stiffness, numbness, and color changes. These issues negatively affected participants\' lives, impairing walking, driving, and socializing, and causing issues with footwear and hosiery.
CONCLUSIONS: This large qualitative study exploring the experiences of patients with SSc-RP in the feet identified several key domains of high importance to patients. SSc-RP is common in the feet, presents in several patterns, and impacts multiple aspects of patients\' lives. These findings indicate where future foot-specific interventions for RP could be targeted. Findings from this study improve understanding of what domains are important to patients with SSc-RP affecting the feet and will contribute to the development of a core outcome set for foot and ankle disorders in rheumatic and musculoskeletal diseases.