Bhonsle Ajinkya, Coughlan Timothy, Graven Rachel, Bussa Paula, Gingold Michael, Polkinghorne Kevan R, Ryan Jessica, Kitching A Richard
Department of Nephrology, Monash Medical Centre, Monash Health, Clayton, Victoria, Australia.
Monash School of Medicine, Monash University, Clayton, Victoria, Australia.
Clin Rheumatol. 2025 Jan;44(1):367-375. doi: 10.1007/s10067-024-07256-0. Epub 2024 Dec 13.
INTRODUCTION/OBJECTIVES: Patients with anti-neutrophil cytoplasmic antibody-associated vasculitis (AAV) experience reduced health-related quality of life (HRQoL). Global assessment tools use visual analogue scales to provide patients' and physicians' views on disease activity or the patient's overall health and well-being. The aim of this study was to examine the relationships between patient and physician global assessments (PtGA and PhGa) as they relate to overall health in people with AAV.
Patients with AAV attending a tertiary vasculitis clinic participated in this prospective observational study. The primary outcome measured was PtGA and PhGA scores, with higher scores representing better health. SF-36 assessed HRQoL. Discordant scores were defined as an absolute difference of ≥ 20 between PhGA and PtGA.
Ninety-seven patients (mean age 58 years, 46% male) participated. Most were taking immunosuppressive therapy (88%) and had kidney involvement (79%). The mean PhGa and PtGA were similar (mean difference - 2.6, [CI] 0.5, 4.7). Physicians' global assessments were lower in the 43 (44%) patients with active disease, with a trend towards a lower PtGA in this group. Patients' global assessments were ≥ 20 points higher than PhGAs in 16 patients and ≥ 20 points lower in 10 patients. Negatively discordant patients (PtGA < PhGA) were older and less likely to have active disease than positively discordant patients.
Physicians did not systematically overestimate patients' global health when using the global assessment tool. Discordance rates were 26%, within which, physicians were more likely to assess the patient's health lower than patients themselves. Key Points • There remains an unmet need for patient-reported outcomes assessing quality of life in AAV and other diseases. • The global assessment tool correlates with SF-36 which is commonly used as a tool for assessing quality of life. • Physicians do not tend to overestimate patient's global health both overall and within the discordant sub-group. • Assessing PtGA/PhGA discordance could identify unmet priorities for patients and improve shared physician-patient decision-making.
引言/目的：抗中性粒细胞胞浆抗体相关血管炎（AAV）患者的健康相关生活质量（HRQoL）降低。全球评估工具使用视觉模拟量表来呈现患者和医生对疾病活动或患者整体健康状况及幸福感的看法。本研究的目的是探讨患者和医生的整体评估（PtGA和PhGa）与AAV患者整体健康之间的关系。
在一家三级血管炎诊所就诊的AAV患者参与了这项前瞻性观察研究。测量的主要结果是PtGA和PhGa评分，分数越高表示健康状况越好。SF-36用于评估HRQoL。不一致分数定义为PhGa和PtGA之间的绝对差值≥20。
97名患者（平均年龄58岁，46%为男性）参与了研究。大多数患者正在接受免疫抑制治疗（88%），且有肾脏受累（79%）。PhGa和PtGA的平均值相似（平均差值-2.6，[CI] 0.5，4.7）。在43名（44%）患有活动性疾病的患者中，医生的整体评估较低，该组患者的PtGA有降低趋势。16名患者的患者整体评估比PhGa高≥20分，10名患者低≥20分。与正向不一致患者相比，负向不一致患者（PtGA < PhGa）年龄更大，患活动性疾病的可能性更小。
使用整体评估工具时，医生并未系统性地高估患者的整体健康状况。不一致率为26%，其中医生更有可能比患者自己对患者健康状况的评估更低。要点 • 在评估AAV和其他疾病的生活质量方面，患者报告结局仍存在未满足的需求。 • 整体评估工具与常用作生活质量评估工具的SF-
