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立陶宛某参考中心HS患者的人口统计学数据、风险因素及疾病负担

Demographic Data, Risk Factors, and Disease Burden of HS Patients in Lithuania at a Reference Center.

作者信息

Raudonis Tadas, Šakaitytė Austėja, Vileikis Tomas Petras, Černel Vitalij, Gancevičiene Rūta, Zouboulis Christos C

机构信息

Clinic of Infectious Disease and Dermatovenereology, Institute of Clinical Medicine, Faculty of Medicine, Vilnius University, M. K. Čiurlionio g. 21, 03101 Vilnius, Lithuania.

European Hidradenitis Suppurativa Foundation e.V., 06847 Dessau, Germany.

出版信息

Healthcare (Basel). 2024 Sep 14;12(18):1849. doi: 10.3390/healthcare12181849.

Abstract

BACKGROUND

Hidradenitis suppurativa (HS) diagnosis often faces a global delay of 7.2 years due to factors like lack of recognition, stigma, and socioeconomic barriers. Limited effective therapies and frequent exacerbations impact patients' quality of life, posing a significant burden on healthcare systems.

METHODS

HS patients were assessed according to European Hidradenitis Suppurativa Foundation (EHSF) Registry questionnaire guidelines at various stages of the disease and treatment.

RESULTS

The study included 49 patients; 57.14% (n = 28) of them were male. The average age of the subjects was 39.91 ± 13.665 years; the average BMI was 27.84 ± 7.362. A total of 59.18% (n = 29) were active or previous smokers. There were statistically more male smokers than female ( < 0.01). Average disease onset was 25.71 ± 13.743 years; the mean time to diagnosis was 5.2 ± 7.607 years. A total of 70.2% (n = 33) were previously misdiagnosed. Subjects had 6.17 ± 6.98 painful days over the preceding 4 weeks. The average intensity of pain according to the visual analogue scale (VAS) was 5.60 ± 3.36 points. The mean dermatology life quality index (DLQI) at baseline was 8.9 ± 7.436.

CONCLUSIONS

The research revealed delayed diagnoses, especially for females. Smoking was linked to higher Hurley stages, with a prevalence among male smokers, and HS had a substantial impact on patients' quality of life.

摘要

背景

由于缺乏认知、耻辱感和社会经济障碍等因素,化脓性汗腺炎(HS)的诊断通常会出现7.2年的全球延迟。有效的治疗方法有限且频繁发作会影响患者的生活质量,给医疗系统带来重大负担。

方法

根据欧洲化脓性汗腺炎基金会(EHSF)登记问卷指南,在疾病和治疗的各个阶段对HS患者进行评估。

结果

该研究纳入了49名患者;其中57.14%(n = 28)为男性。受试者的平均年龄为39.91±13.665岁;平均体重指数为27.84±7.362。共有59.18%(n = 29)为现吸烟者或既往吸烟者。男性吸烟者在统计学上多于女性(<0.01)。平均发病年龄为25.71±13.743岁;平均诊断时间为5.2±7.607年。共有70.2%(n = 33)曾被误诊。受试者在过去4周内有6.17±6.98个疼痛日。根据视觉模拟量表(VAS),疼痛的平均强度为5.60±3.36分。基线时的平均皮肤病生活质量指数(DLQI)为8.9±7.436。

结论

该研究揭示了诊断延迟的情况,尤其是女性。吸烟与更高的赫尔利分期相关,男性吸烟者中患病率较高,且HS对患者的生活质量有重大影响。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6c1f/11431364/d0fdbd83bf3e/healthcare-12-01849-g001.jpg

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