Exploring racial and ethnic disparities in the hidradenitis suppurativa patient disease journey: Results from a real-world study in Europe and the USA

被引:0
|
作者
Jaleel, Tarannum [1 ]
Mitchell, Beth [2 ]
Burge, Russel [2 ,3 ]
Cohee, Andrea [2 ]
Wallinger, Hayley [4 ]
Truman, Isabel [4 ]
Keal, Aaron [4 ]
Middleton-Dalby, Chloe [4 ]
Barlow, Sophie [4 ]
Patel, Dipak [2 ]
机构
[1] Duke Univ, Med Ctr, Durham, NC USA
[2] Eli Lilly & Co, Value Evidence & Outcomes, Indianapolis, IN USA
[3] Univ Cincinnati, Winkle Coll Pharm, Div Pharmaceut Sci, Cincinnati, OH USA
[4] Adelphi Real World, Bollington, England
来源
JOURNAL OF DERMATOLOGY | 2024年 / 51卷 / 12期
关键词
cross-sectional study; delayed diagnosis; ethnicity; health equity; hidradenitis suppurativa; HEALTH-CARE UTILIZATION; AGREEMENT; PHYSICIAN;
D O I
10.1111/1346-8138.17386
中图分类号
R75 [皮肤病学与性病学];
学科分类号
100206 ;
摘要
Hidradenitis suppurativa (HS) is an inflammatory skin disease associated with high morbidity and disability that has limited treatment options. People from racial and ethnic minority groups may experience greater disease severity and delay to diagnosis. This study assessed the impact of race/ethnicity on HS diagnosis and management in real-world clinical settings. Data were derived from the Adelphi Real World Hidradenitis Suppurativa Disease Specific Programme, a survey of dermatologists and their consulting HS patients in five European countries and the USA in 2020/2021. Dermatologists returned demographic and clinical data, and treatment goals and satisfaction for their next five to seven consulting patients. Patients completed a questionnaire on disease history and diagnosis, disease burden, and treatment satisfaction. Groups were compared with bivariate tests. In total, 312 physicians returned data on 1787 patients; 57.6% were female and 77.7% White. People from racial and ethnic minority groups were younger than White patients (32.9 +/- 11.6 vs. 34.9 +/- 12.4, mean +/- standard deviation) and reported symptoms at a younger age (23.3 +/- 10.8 vs. 26.2 +/- 11.1), but their time to first consultation was longer than for White patients (2.6 +/- 5.7 vs. 1.2 +/- 2.5 years). People from racial and ethnic minority groups took longer to receive a correct diagnosis following first consultation (2.7 +/- 5.3 vs. 1.5 +/- 4.1 years) and were more likely to be misdiagnosed with boils (73.5% vs. 40.4%). People from racial and ethnic minority groups had a greater disease awareness at diagnosis and reported wanting greater support. People from racial and ethnic minority groups reported a greater impact on life, more severe pain, and a greater level of activity impairment in the Work Productivity and Activity Impairment: General Health (27.0 +/- 25.2 vs. 20.0 +/- 20.6). All P values were <= 0.05. These data show evidence of delayed diagnosis and higher HS symptom burden amongst people from racial and ethnic minority groups, highlighting health disparities in HS.
引用
收藏
页码:1547 / 1558
页数:12
相关论文
共 50 条
  • [31] Real-world effectiveness of adalimumab in patients with moderate-to-severe hidradenitis suppurativa: the 1-year SOLACE study
    Gulliver, W.
    Alavi, A.
    Wiseman, M. C.
    Gooderham, M. J.
    Rao, J.
    Alam, M. S.
    Papp, K. A.
    Desjardins, O.
    Jean, C.
    JOURNAL OF THE EUROPEAN ACADEMY OF DERMATOLOGY AND VENEREOLOGY, 2021, 35 (12) : 2431 - 2439
  • [32] REAL-WORLD EFFECTIVENESS AND RACIAL/ETHNIC DISPARITIES IN IMMUNOTHERAPY FOR ADVANCED HEPATOCELLULAR CARCINOMA: ANALYSIS OF US NATIONAL CANCER DATABASE
    Ahn, Joseph C.
    Lauzon, Marie
    Luu, Michael
    Noureddin, Mazen
    Ayoub, Walid S.
    Kuo, Alexander
    Sundaram, Vinay
    Kosari, Kambiz
    Nissen, Nicholas N.
    Gong, Jun
    Hendifar, Andrew
    Roberts, Lewis R.
    Abou-Alfa, Ghassan K.
    Singal, Amit G.
    Yang, Ju Dong
    GASTROENTEROLOGY, 2022, 162 (07) : S1140 - S1140
  • [33] Real-world safety and clinical response of Janus kinase inhibitor upadacitinib in the treatment of hidradenitis suppurativa: A retrospective cohort study
    Kozera, Emily
    Flora, Akshay
    Frew, John W.
    JOURNAL OF THE AMERICAN ACADEMY OF DERMATOLOGY, 2022, 87 (06) : 1440 - 1442
  • [34] Insights into the Window of Opportunity and Outcome Measures in Patients with Moderate to Severe Hidradenitis Suppurativa Treated with Secukinumab: A Real-World Study
    Haselgruber, Sofia
    Fernandez-Crehuet-Serrano, Pablo
    Fernandez-Ballesteros, Maria Dolores
    Padial-Gomez, Alicia
    Hernandez-Rodriguez, Juan Carlos
    Ortiz-alvarez, Juan
    Navarro-Guillamon, Pedro
    Membrive-Jimenez, Cristina
    Cuenca-Barrales, Carlos
    Molina-Leyva, Alejandro
    DERMATOLOGY AND THERAPY, 2024, 14 (07) : 1875 - 1890
  • [35] PATIENT-REPORTED UNMET NEEDS IN HAEMOPHILIA: RESULTS FROM A REAL-WORLD STUDY
    Waller, J.
    Shah, S.
    Porstmann, T.
    Dusendang, J. R.
    HAEMOPHILIA, 2023, 29 : 135 - 135
  • [36] Risks by age and sex for thyroid dysfunction in patients with hidradenitis suppurativa: Real-world data from a large urban Midwestern US dermatology patient population
    Bison, Henry
    Memon, Rohail
    Figueiredo, Anna C.
    Gwillim, Eran
    West, Dennis P.
    Nardone, Beatrice
    JOURNAL OF THE AMERICAN ACADEMY OF DERMATOLOGY, 2020, 83 (06) : AB72 - AB72
  • [37] Physician-patient alignment on menopause-associated symptom burden: real-world evidence from the USA and Europe
    Kingsberg, Sheryl
    Nappi, Rossella E.
    Scott, Megan
    Schoof, Nils
    Moeller, Carsten
    Lee, Lauren
    Janssenswillen, Cecile
    Caetano, Cecilia
    Banks, Victoria
    CLIMACTERIC, 2024, 27 (06) : 534 - 541
  • [38] Epidemiology and patient journey of Rett syndrome in the United States: a real-world evidence study
    May, Damian
    Kponee-Shovein, Kale
    Mahendran, Malena
    Downes, Nathaniel
    Sheng, Kristy
    Lefebvre, Patrick
    Cheng, Wendy Y.
    BMC NEUROLOGY, 2023, 23 (01)
  • [39] Epidemiology and patient journey of Rett syndrome in the United States: a real-world evidence study
    Damian May
    Kalé Kponee-Shovein
    Malena Mahendran
    Nathaniel Downes
    Kristy Sheng
    Patrick Lefebvre
    Wendy Y. Cheng
    BMC Neurology, 23
  • [40] Wilson disease in the USA: epidemiology and real-world patient characteristics based on a retrospective observational health claims study
    Fang, Shona
    Strader, Carey
    Costantino, Halley
    Weiss, Karl Heinz
    Hedera, Peter
    BMJ OPEN, 2024, 14 (12):