马来西亚成人广泛性脓疱性牛皮癣患者的健康相关生活质量:一项横断面研究

IF 3.5 2区 医学 Q2 GENETICS & HEREDITY
Xin Qian Seah, Siew Chin Ong, Mustapha Mohammed, Mei Ee Tay, Latha Selvarajah, Wooi Chiang Tan, Sook Yee Michelle Voo, Yen Loo Ting, Jyh Jong Tang, Azura Mohd Affandi
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引用次数: 0

摘要

背景:全身性脓疱性银屑病(GPP)是一种罕见但严重的银屑病,其特征是突然蔓延的红斑伴无菌脓疱、结痂和脱屑。目的:本研究旨在评估马来西亚爆发期和非爆发期GPP患者的通用和皮肤病特异性健康相关生活质量(HRQoL)。方法:该研究是一项多中心横断面研究,在2024年5月15日至2024年11月30日期间在马来西亚卫生部下属综合医院诊断为GPP的患者中进行。采用皮肤科生活质量指数(DLQI)和EuroQol-5维度(EQ-5D)评估GPP患者的HRQoL。采用IBM SPSS 28.0版本对数据进行描述性统计和推断性统计。结果:共有来自6个中心的54例患者入组研究,平均(标准差,SD)年龄为44.6岁(SD: 15.5),大多数为女性(n = 41, 75.9%)。GPP患者DLQI和EQ-5D的平均(SD)评分分别为8.44 (SD: 7.12)和0.74 (SD: 0.27)。13名患者(24%)在评估时处于耀斑期。在耀斑期,患者的生活质量较差,DLQI平均评分显著升高,为15.70 (SD: 7.33) (p)。结论:该研究显示了GPP的实质和动态负担,马来西亚患者的HRQoL明显受损,特别是在疾病耀斑期。这些发现表明,优先考虑耀斑预防和解决GPP患者的整体需求,以最大限度地提高他们的长期生活质量的重要性。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Health-related quality of life of adults with generalized pustular psoriasis in Malaysia: a cross-sectional study.

Background: Generalized Pustular Psoriasis (GPP) is a rare but severe form of psoriasis, characterized by flares involving the sudden spread of erythema with sterile pustules, crusting, and scaling.

Objective: The study aimed to assess both generic and dermatology-specific health-related quality of life (HRQoL) in patients with GPP across flare and non-flare stages in Malaysia.

Methods: The study was a multicenter cross-sectional study conducted among patients diagnosed with GPP attending the General Hospitals under the Ministry of Health, Malaysia, between May 15, 2024, and November 30, 2024. The HRQoL of the GPP patients were assessed using the validated versions of the Dermatology Life Quality Index (DLQI) and EuroQol-5 Dimensions (EQ-5D). Data were statistically analysed using descriptive and inferential statistics using IBM SPSS version 28.0.

Results: A total of fifty-four patients from six centres were enrolled into the study, with a mean (standard deviation, SD) age of 44.6 (SD: 15.5), the majority being female (n = 41, 75.9%). The mean (SD) scores of the DLQI and EQ-5D for the patients with GPP were 8.44 (SD: 7.12) and 0.74 (SD: 0.27), respectively. Thirteen patients (24%) were in their flares phase at the time of assessment. During the flares stage, patients experienced poorer quality of life, as indicated by a significantly higher mean DLQI score of 15.70 (SD: 7.33) (p < 0.001), lower EQ-5D score of 0.41 (SD: 0.30) (p < 0.001), and an EQ-VAS score of 51.15 (SD: 19.70) (p = 0.006), compared to those with non-flares. Patients' flare status was a significant predictor of impaired HRQoL based on DLQI (p = 0.004), EQ-5D (p < 0.001) and EQ-VAS (p < 0.001) while higher BMI was associated with impaired EQ-VAS score (p = 0.001).

Conclusion: The study demonstrates the substantial and dynamic burden of GPP, with a significant impairment in HRQoL among the patients in Malaysia, particularly during disease flares. These findings suggest the importance of prioritizing flares prevention and addressing the holistic needs of GPP patients to maximize their quality of life over the long term.

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来源期刊
Orphanet Journal of Rare Diseases
Orphanet Journal of Rare Diseases 医学-医学:研究与实验
CiteScore
6.30
自引率
8.10%
发文量
418
审稿时长
4-8 weeks
期刊介绍: Orphanet Journal of Rare Diseases is an open access, peer-reviewed journal that encompasses all aspects of rare diseases and orphan drugs. The journal publishes high-quality reviews on specific rare diseases. In addition, the journal may consider articles on clinical trial outcome reports, either positive or negative, and articles on public health issues in the field of rare diseases and orphan drugs. The journal does not accept case reports.
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