Murphy Susan L, Lescoat Alain, Alore Mary, Hughes Michael, Pauling John D, Sabbagh Maya, Khanna Dinesh
Department of Physical Medicine and Rehabilitation, University of Michigan, 24 Frank Lloyd Wright Drive, Lobby M Suite 3100, Ann Arbor, MI, 48105, USA.
VA Ann Arbor Health Care System, Geriatric Research, Education, and Clinical Center (GRECC), 2215 Fuller Rd, Ann Arbor, MI, 48105, USA.
Clin Rheumatol. 2021 Apr;40(4):1611-1616. doi: 10.1007/s10067-021-05598-7. Epub 2021 Jan 24.
INTRODUCTION/OBJECTIVES: To examine how people define Raynaud's phenomenon (RP) based on their lived experiences and explore if differences exist depending on primary or secondary RP diagnosis.
An international survey was sent to people with RP through health systems, foundations, and social media. Qualitative coding of responses to an open text question regarding one's own definition of RP was performed and themes were identified. The prevalence of themes among the sample and then comparisons between themes among people who self-reported primary versus secondary diagnosis of RP were performed.
There were 1345 respondents from 45 countries (mean age 51.5 years, 93% female) who defined RP in their own words; 17% reported primary RP and 83% reported secondary RP (69% of secondary RP was scleroderma-related, n = 927). Over half defined their RP by describing the body parts affected, color changes, pain, and triggers or situations in which an episode occurs. Patients with primary RP more frequently defined RP in terms of its impact on function/quality of life and pain compared to those with secondary RP (34.5% versus 25.3%, respectively, p=0.004; 54.0% versus 46.8%, p=0.05). Patients with secondary RP more frequently included specific body parts, color change, the management of attacks, and other digital vascular complications in their definition of RP.
We have identified differences in how people with primary and secondary RP define RP, in terms of how they feel and function. Our findings have implications for the domains of outcome measures for assessing RP within different patient populations. Key Points • Pain is more often mentioned in primary RP and color change in secondary RP. • Over 25% of patients included reduced the quality of life as part of their RP definition. • The concept of "attack" is used to define RP by only 2% of patients.
引言/目的：研究人们如何根据自身经历来定义雷诺现象（RP），并探讨根据原发性或继发性RP诊断是否存在差异。
通过卫生系统、基金会和社交媒体向患有RP的人群发送了一项国际调查。对关于个人对RP定义的开放性文本问题的回答进行定性编码，并确定主题。计算样本中各主题的患病率，然后对自我报告为原发性与继发性RP诊断的人群之间的主题进行比较。
来自45个国家的1345名受访者（平均年龄51.5岁，93%为女性）用自己的语言定义了RP；17%报告为原发性RP，83%报告为继发性RP（继发性RP的69%与硬皮病相关，n = 927）。超过一半的人通过描述受影响的身体部位、颜色变化、疼痛以及发作的触发因素或情况来定义他们的RP。与继发性RP患者相比，原发性RP患者更频繁地根据其对功能/生活质量和疼痛的影响来定义RP（分别为34.5%对25.3%，p = 0.004；54.0%对46.8%，p = 0.05）。继发性RP患者在其RP定义中更频繁地包括特定身体部位、颜色变化、发作的处理以及其他手指血管并发症。
我们已经确定了原发性和继发性RP患者在如何定义RP方面的差异，包括他们的感受和功能。我们的研究结果对评估不同患者群体中RP的结局指标领域具有启示意义。要点 • 原发性RP中疼痛更常被提及，继发性RP中颜色变化更常被提及。 • 超过25%的患者将生活质量下降纳入其RP定义的一部分。 • 仅2%的患者使用“发作”概念来定义RP。
