当前位置：
X-MOL 学术
›
J. Am. Acad. Dermatol.
›
论文详情
Our official English website, www.x-mol.net, welcomes your
feedback! (Note: you will need to create a separate account there.)
Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project.
Journal of the American Academy of Dermatology ( IF 12.8 ) Pub Date : 2019-07-03 , DOI: 10.1016/j.jaad.2019.06.1301 Amit Garg 1 , Erica Neuren 1 , Denny Cha 1 , Joslyn S Kirby 2 , John R Ingram 3 , Gregor B E Jemec 4 , Solveig Esmann 4 , Linnea Thorlacius 4 , Bente Villumsen 5 , Véronique Del Marmol 6 , Aude Nassif 7 , Maia Delage 7 , Thrasyvoulos Tzellos 8 , Dagfinn Moseng 8 , Øystein Grimstad 8 , Haley Naik 9 , Robert Micheletti 10 , Sandra Guilbault 11 , Angie Parks Miller 12 , Iltefat Hamzavi 13 , Hessel van der Zee 14 , Errol Prens 14 , Naomi Kappe 14 , Christine Ardon 14 , Brian Kirby 15 , Rosalind Hughes 15 , Christos C Zouboulis 16 , Georgios Nikolakis 16 , Falk G Bechara 17 , Lukasz Matusiak 18 , Jacek Szepietowski 18 , Amelia Glowaczewska 18 , Saxon D Smith 19 , Noah Goldfarb 20 , Steven Daveluy 21 , Christina Avgoustou 22 , Evangelos Giamarellos-Bourboulis 22 , Steven Cohen 23 , Yssra Soliman 23 , Elena Gonzalez Brant 24 , Oleg Akilov 24 , Christopher Sayed 25 , Jerry Tan 26 , Afsaneh Alavi 27 , Michelle A Lowes 28 , José Carlos Pascual 29 , Hassan Riad 30 , Shani Fisher 31 , Arnon Cohen 32 , So Yeon Paek 33 , Barry Resnik 34 , Qiang Ju 35 , Lanqi Wang 35 , Andrew Strunk 1
Journal of the American Academy of Dermatology ( IF 12.8 ) Pub Date : 2019-07-03 , DOI: 10.1016/j.jaad.2019.06.1301 Amit Garg 1 , Erica Neuren 1 , Denny Cha 1 , Joslyn S Kirby 2 , John R Ingram 3 , Gregor B E Jemec 4 , Solveig Esmann 4 , Linnea Thorlacius 4 , Bente Villumsen 5 , Véronique Del Marmol 6 , Aude Nassif 7 , Maia Delage 7 , Thrasyvoulos Tzellos 8 , Dagfinn Moseng 8 , Øystein Grimstad 8 , Haley Naik 9 , Robert Micheletti 10 , Sandra Guilbault 11 , Angie Parks Miller 12 , Iltefat Hamzavi 13 , Hessel van der Zee 14 , Errol Prens 14 , Naomi Kappe 14 , Christine Ardon 14 , Brian Kirby 15 , Rosalind Hughes 15 , Christos C Zouboulis 16 , Georgios Nikolakis 16 , Falk G Bechara 17 , Lukasz Matusiak 18 , Jacek Szepietowski 18 , Amelia Glowaczewska 18 , Saxon D Smith 19 , Noah Goldfarb 20 , Steven Daveluy 21 , Christina Avgoustou 22 , Evangelos Giamarellos-Bourboulis 22 , Steven Cohen 23 , Yssra Soliman 23 , Elena Gonzalez Brant 24 , Oleg Akilov 24 , Christopher Sayed 25 , Jerry Tan 26 , Afsaneh Alavi 27 , Michelle A Lowes 28 , José Carlos Pascual 29 , Hassan Riad 30 , Shani Fisher 31 , Arnon Cohen 32 , So Yeon Paek 33 , Barry Resnik 34 , Qiang Ju 35 , Lanqi Wang 35 , Andrew Strunk 1
Affiliation
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.
中文翻译：
评估化脓性汗腺炎患者未满足的需求：影响和医疗需求全球调查（VOICE）项目的结果。
背景技术对化脓性汗腺炎（HS）患者的需求评估将支持多学科护理，治疗，研究，倡导和慈善事业方面的进步。目的从HS患者的角度评估未满足的需求。方法对2017年10月至2018年7月之间的患者进行前瞻性跨国调查。结果在接受正式的HS诊断之前，有63.7％（n = 827）的患者就诊了5次以上。诊断的平均延迟为10.2±8.9年。患者每天，每周或每月经历的耀斑分别为23.0％，29.8％和31.1％。大多数（61.4％[n = 798]）认为近期与HS相关的疼痛为中度或更高，而4.5％的受访者认为近期疼痛是最严重的。接受皮肤科治疗的难度为37.0％（n = 481）。患者报告到急诊科和医院就诊次数≥5次，分别占18.3％和12.5％。据报告，对生活的极端影响为43.3％（n = 563），而由于疾病而致残的比例为14.5％。患者报告合并症的频率很高，最常见的是情绪障碍。患者对医学或手术治疗的满意度分别为45.9％和34.6％。局限性数据是自我报告的。可能已选择了病情较严重的患者。结论HS患者已经确定了一些关键的未满足需求，需要利益相关者的协作才能有意义地解决。最常见的是情绪障碍。患者对医学或手术治疗的满意度分别为45.9％和34.6％。局限性数据是自我报告的。可能已选择了病情较严重的患者。结论HS患者已经确定了一些关键的未满足需求，需要利益相关者的协作才能有意义地解决。最常见的是情绪障碍。患者对医学或手术治疗的满意度分别为45.9％和34.6％。局限性数据是自我报告的。可能已选择了病情较严重的患者。结论HS患者已经确定了一些关键的未满足需求，需要利益相关者的协作才能有意义地解决。
更新日期：2020-01-11
中文翻译：
评估化脓性汗腺炎患者未满足的需求：影响和医疗需求全球调查（VOICE）项目的结果。
背景技术对化脓性汗腺炎（HS）患者的需求评估将支持多学科护理，治疗，研究，倡导和慈善事业方面的进步。目的从HS患者的角度评估未满足的需求。方法对2017年10月至2018年7月之间的患者进行前瞻性跨国调查。结果在接受正式的HS诊断之前，有63.7％（n = 827）的患者就诊了5次以上。诊断的平均延迟为10.2±8.9年。患者每天，每周或每月经历的耀斑分别为23.0％，29.8％和31.1％。大多数（61.4％[n = 798]）认为近期与HS相关的疼痛为中度或更高，而4.5％的受访者认为近期疼痛是最严重的。接受皮肤科治疗的难度为37.0％（n = 481）。患者报告到急诊科和医院就诊次数≥5次，分别占18.3％和12.5％。据报告，对生活的极端影响为43.3％（n = 563），而由于疾病而致残的比例为14.5％。患者报告合并症的频率很高，最常见的是情绪障碍。患者对医学或手术治疗的满意度分别为45.9％和34.6％。局限性数据是自我报告的。可能已选择了病情较严重的患者。结论HS患者已经确定了一些关键的未满足需求，需要利益相关者的协作才能有意义地解决。最常见的是情绪障碍。患者对医学或手术治疗的满意度分别为45.9％和34.6％。局限性数据是自我报告的。可能已选择了病情较严重的患者。结论HS患者已经确定了一些关键的未满足需求，需要利益相关者的协作才能有意义地解决。最常见的是情绪障碍。患者对医学或手术治疗的满意度分别为45.9％和34.6％。局限性数据是自我报告的。可能已选择了病情较严重的患者。结论HS患者已经确定了一些关键的未满足需求，需要利益相关者的协作才能有意义地解决。
京公网安备 11010802027423号