Baseline patient-reported outcomes from UNITE: an observational, international, multicentre registry to evaluate hidradenitis suppurativa in clinical practice
Baseline patient-reported outcomes from UNITE: an observational, international, multicentre registry to evaluate hidradenitis suppurativa in clinical practice
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DOI：
10.1111/jdv.16132
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发表时间：
2020-03-01
影响因子：
9.2
通讯作者：
Sobell, J.
中科院分区：
文献类型：
--
作者：
Kimball, A. B.;Crowley, J. J.;Sobell, J.
背景化脓性汗腺炎（HS）是一种慢性炎症性皮肤病，伴有多种合并症，对患者的生活有很大影响。临床设置使用几种工具，包括一个有效的HS-具体instrument.Methods本研究评估HRQoL数据从国际UNITE HS疾病登记处。根据当地法规执行患者报告结局（PRO）工具的管理和数据收集。所有数据进行了评估，采用描述性统计方法。结果PRO数据从529成人和65青少年进行了评价。大多数成人（64.5%）和青少年（73.8%）被归类为Hurley II期，基线时有大量疾病负担。HS对成人和青少年的生活分别有较大影响（平均DLQI = 12.6）和中等影响（平均CDLQI = 6.9）。大约58%的成年人和41%的青少年的焦虑评分超过正常范围; 30%的成年人和16%的青少年表现出抑郁症状。根据HSSA和HSIA评分，大约30%的成年人报告了多种HS临床症状的重大负担，超过45%的人报告了HS的重大情感影响，对他们的亲密关系产生了不利影响。只有60%的成年人就业，其中，64%的报告至少有一定程度的损害，而工作，因为HS。结论根据PRO收集的患者参加了UNITE注册表，一个真实的世界，临床环境，HS有一个显着的负面影响，受这种疾病影响的患者的日常生活。
Background Hidradenitis suppurativa (HS) is a chronic, inflammatory, skin condition associated with many comorbidities and often has a substantial impact on patients' lives.Objectives To evaluate symptom burden and health-related quality of life (HRQoL) at baseline in patients with HS in an observational, real-world, clinical setting using several tools including a validated HS-specific instrument.Methods This study evaluated HRQoL data from the international UNITE HS disease registry. Administration of patient-reported outcome (PRO) instruments and collection of data were executed per local regulations. All data were assessed using descriptive statistical methods.Results PRO data from 529 adults and 65 adolescents were evaluated. Most adults (64.5%) and adolescents (73.8%) were classified as Hurley Stage II with substantial disease burden at baseline. HS had a large effect (mean DLQI = 12.6) and moderate effect (mean CDLQI = 6.9) on the lives of adults and adolescents, respectively. Approximately 58% of adults and 41% of adolescents had anxiety scores beyond the normal range; 30% of adults and 16% of adolescents exhibited symptoms of depression. Based on HSSA and HSIA scores, approximately 30% of adults reported a substantial burden of multiple HS clinical symptoms and more than 45% reported a significant emotional impact of HS that adversely affected their intimate relationships. Only 60% of adults were employed and of those, 64% reported at least some degree of impairment while working because of HS.Conclusions Based on PROs collected from patients enrolled in the UNITE registry, a real-world, clinical setting, HS has a significant negative impact on the everyday lives of patients affected by this disease.