评估化脓性汗腺炎患者的未满足需求：来自全球影响和医疗需求调查（VOICE）项目的结果。

Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project.

机构信息

Department of Dermatology, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, New Hyde Park, New York.

出版信息

J Am Acad Dermatol. 2020 Feb;82(2):366-376. doi: 10.1016/j.jaad.2019.06.1301. Epub 2019 Jul 3.

DOI:10.1016/j.jaad.2019.06.1301

PMID:31279015

Abstract

BACKGROUND

A needs assessment for patients with hidradenitis suppurativa (HS) will support advancements in multidisciplinary care, treatment, research, advocacy, and philanthropy.

OBJECTIVE

To evaluate unmet needs from the perspective of HS patients.

METHODS

Prospective multinational survey of patients between October 2017 and July 2018.

RESULTS

Before receiving a formal HS diagnosis, 63.7% (n = 827) of patients visited a physician ≥5 times. Mean delay in diagnosis was 10.2 ± 8.9 years. Patients experienced flare daily, weekly, or monthly in 23.0%, 29.8%, and 31.1%, respectively. Most (61.4% [n = 798]) rated recent HS-related pain as moderate or higher, and 4.5% described recent pain to be the worst possible. Access to dermatology was rated as difficult by 37.0% (n = 481). Patients reported visiting the emergency department and hospital ≥5 times for symptoms in 18.3% and 12.5%, respectively. An extreme impact on life was reported by 43.3% (n = 563), and 14.5% were disabled due to disease. Patients reported a high frequency of comorbidities, most commonly mood disorders. Patients were dissatisfied with medical or procedural treatments in 45.9% and 34.6%, respectively.

LIMITATIONS

Data were self-reported. Patients with more severe disease may have been selected.

CONCLUSION

HS patients have identified several critical unmet needs that will require stakeholder collaboration to meaningfully address.

摘要

背景

对患有化脓性汗腺炎（HS）的患者进行需求评估，将有助于推进多学科护理、治疗、研究、宣传和慈善事业。

目的

从 HS 患者的角度评估未满足的需求。

方法

2017 年 10 月至 2018 年 7 月，对患者进行了前瞻性的多国调查。

结果

在获得正式的 HS 诊断之前，63.7%（n=827）的患者就诊≥5 次。平均诊断延误时间为 10.2±8.9 年。患者的疾病发作频率分别为每天、每周和每月各 23.0%、29.8%和 31.1%。大多数（61.4%[n=798]）患者自评近期 HS 相关疼痛为中度或更严重，4.5%的患者描述近期疼痛为最严重。37.0%（n=481）的患者认为获得皮肤科医生的诊治很困难。18.3%和 12.5%的患者因症状分别至少 5 次前往急诊室和医院。43.3%（n=563）的患者报告 HS 对生活造成了极大的影响，14.5%的患者因疾病而丧失工作能力。患者报告了较高频率的合并症，最常见的是情绪障碍。45.9%和 34.6%的患者分别对药物和手术治疗不满意。