Neisinger Sophia, Salameh Pascale, Gutsche Annika, Aulenbacher Felix, Siebenhaar Frank, Maurer Marcus
Institute of Allergology, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Berlin, Germany.
Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Immunology and Allergology, Berlin, Germany.
Clin Transl Allergy. 2025 Jan;15(1):e70026. doi: 10.1002/clt2.70026.
Patient-reported outcome measures (PROMs) help to assess disease control and quality of life (QoL) in chronic spontaneous urticaria (CSU) and recurrent angioedema (RA). This study aimed to assess the correlation between two different concepts: disease control and QoL, using disease-specific PROMs.
We analyzed data from 445 CSU and 330 RA patients who completed both a disease control and QoL PROM as part of the clinical routine. We included the UCT and CU-Q2oL for CSU and AECT and AE-QoL for RA.
In CSU and RA, disease control scores positively correlated with QoL scores (Spearman's rho correlation coefficient (CR) -0.757, -0.735; p < 0.001) with better disease control corresponding to better quality of life. However, 5.9% of CSU patients and 28% of RA patients with complete disease control had impaired QoL. In CSU, QoL was impaired in 69.2% of patients based on the CU-Q2oL and in 62.7% of patients based on a single numeric question from the UCT, with a mismatch in 89/445 patients. In RA, QoL was impaired in 58.5% using the AE-QoL and in 52.7% using a single numeric question from the AECT30mo, with a mismatch in 69/330 patients. Different domains of the QoL PROMs showed different degrees of influence on disease control, with "Itching/Embarrassment" showing the strongest correlation with the UCT (CR -0.804; p < 0.001) and "Functioning" with the AECT3mo (CR -0.824; p < 0.001).
Although most patients with controlled disease have better quality of life, unexpectedly, quality of life remains impaired in up to one-fourth of patients with completely controlled CSU and RA. Reasons behind this should be investigated in further studies.
患者报告结局测量(PROMs)有助于评估慢性自发性荨麻疹(CSU)和复发性血管性水肿(RA)的疾病控制情况和生活质量(QoL)。本研究旨在使用疾病特异性PROMs评估疾病控制和生活质量这两个不同概念之间的相关性。
我们分析了445例CSU患者和330例RA患者的数据,这些患者在临床常规检查中同时完成了疾病控制和生活质量PROMs。对于CSU,我们纳入了UCT和CU-Q2oL;对于RA,我们纳入了AECT和AE-QoL。
在CSU和RA中,疾病控制评分与生活质量评分呈正相关(斯皮尔曼等级相关系数(CR)分别为-0.757、-0.735;p < 0.001),疾病控制越好,生活质量越高。然而,5.9%的CSU患者和28%的疾病完全得到控制的RA患者生活质量受损。在CSU中,根据CU-Q2oL,69.2%的患者生活质量受损;根据UCT中的单个数字问题,62.7%的患者生活质量受损,445例患者中有89例存在不匹配情况。在RA中,使用AE-QoL时,58.5%的患者生活质量受损;使用AECT30mo中的单个数字问题时,52.7%的患者生活质量受损,330例患者中有69例存在不匹配情况。生活质量PROMs的不同领域对疾病控制的影响程度不同,“瘙痒/尴尬”与UCT的相关性最强(CR为-0.804;p < 0.001),“功能”与AECT3mo的相关性最强(CR为-0.824;p < 0.001)。
虽然大多数疾病得到控制的患者生活质量较好,但出乎意料的是,在疾病完全得到控制的CSU和RA患者中,高达四分之一患者生活质量仍受损。对此背后的原因应在进一步研究中进行调查。