Low satisfaction with medical care among patients with hidradenitis suppurativa: A multicenter study

Hidradenitis suppurativa (HS) is a common chronic inflammatory skin disease, which is significantly associated with systemic comorbidities.1 HS usually appears in young women and men and affects them for decades.2, 3 Skin alterations, such as deep-seated inflammatory nodules and suppurating abscesses and fistulas, typically develop in the armpits, groins, perianal area, and buttocks.1 Pain, uncontrolled abscess eruptions, required wound care management, and sexual difficulties can have a huge impact on the daily life and professional activity of those affected.4-7 Options for treatment of HS are limited and include medications with little underlying evidence, such as antibiotics, antiandrogens, and the retinoid drug acitretin.1 Furthermore, several biologics, such as the TNF-α-targeting adalimumab and the interleukin-17-targeting secukinumab and bimekizumab, are approved for severe to moderate HS.1 With a prospective, cross-sectional, anonymous, questionnaire-based multicenter study, we investigated the current satisfaction with the medical care of patients with HS and, for comparison, patients with psoriasis and their treating physicians in Germany. To obtain an up-to-date, realistic picture, the study was conducted in various types of dermatological care facilities between May 2023 and July 2024. A total of 124 HS patients and 133 psoriasis patients answered the questionnaires in an evaluable way. Moreover, 40 and 36 questionnaires completed by dermatologists treating HS patients and psoriasis patients, respectively, were received. When patients were asked to rate their satisfaction with overall medical care for their skin disease on a 0 to 10 scale, the satisfaction level [mean (±SD)] stated by patients with HS (6.7 ± 2.70) was significantly lower than that stated by patients with psoriasis (8.6 ± 2.03) (Figure 1a). There was no significant difference between patients with disease duration below versus equal to or above the median disease duration (14 years) (Figure 1b). However, when looking at the different types of dermatological care facilities from which patients were recruited, satisfaction appeared to be highest in university hospitals (Figure 1b). Next, we analysed the patients' responses regarding their satisfaction with specific aspects of medical care: the received topical therapies, the received systemic therapies, and the received information about HS. Patients' perceptions of all aspects significantly differed between HS and psoriasis patients (Figure 1b), with the highest level of significance for the difference in satisfaction with received systemic therapies (p = 7.5E-12). The second part of our study focused on the perspective of the dermatologists. The level of satisfaction [mean (±SD)] with the medical care for their patients stated for HS (5.1 ± 1.87) was clearly below that for psoriasis (7.5 ± 1.80) (Figure 2a). The dermatologists' satisfaction regarding the medical care for HS was not affected by the type of medical care facility they worked in or the number of HS patients they see per quarter of the year (Figure 2b). However, dermatologists' satisfaction with HS versus psoriasis therapy options differed highly significantly (Figure 2c). A difference was also seen with respect to their satisfaction with options for referring patients to other dermatological care facilities. Taken together, our results indicate that on average the satisfaction with medical care of HS as compared to psoriasis is very limited, as stated by both patients and dermatologists. Poor contentment with the therapies seems to be the most important factor here. To our knowledge, this is the first study analysing the satisfaction of HS patients and their treating dermatologists with overall care for this skin disease. A few previous studies investigating the satisfaction and preferences of patients are restricted to the treatment.8-10 HS patients require higher levels of efficacy, namely a 75%–100% reduction in the abscess and inflammatory nodule counts.10 The fact that, until recently, commonly used drugs have not met this expectation for a relevant number of patients is very consistent with our survey showing the importance of satisfaction with systemic therapies for satisfaction with overall medical care for HS. Thus, our study suggests that improvement in satisfaction with medical care for HS can be achieved by the development and early application of new effective therapies. The authors would like to thank Malte Rozmarynowicz for help with the questionnaires and extracted data, and Theresa Keller from the Charité Institute of Biometry for support with the statistical analyses. Special thanks are due to all patients and doctors who took the time and effort to complete the questionnaires. The study was financially supported by Novartis Pharma GmbH. The funder had no role in the design of this study, its execution, analysis, or interpretation of data. K. Wolk has received research grants or contracts for clinical trials (payment to her institution), support for attending congresses, scientific awards, honoraria for consulting or participation in advisory boards, or honoraria for lectures from one or more of the following: Celgene/Amgen, Celgene/Bristol Myers Squibb, Charité Research Organization, Flexopharm, Janssen-Cilag, Novartis Pharma, Sanofi–Aventis, TFS Trial Form Support, University hospital Magdeburg, European HS foundation (EHSF), and the Symposium on Hidradenitis Suppurativa Advances (SHSA); she also has a non-financial relationship to the HS task force of the German Consortium for Dermatological Research (ADF). G. Kokolakis has received travel grants or honoraria, or has been a consultant member of advisory boards and speakers bureaus for one or more of the following: AbbVie Deutschland GmbH & Co. KG, Actelion Pharmaceuticals Ltd., Almirall S.A., Amgen GmbH, Basilea Pharmaceutica Ltd., Bayer Schering Pharma AG, Biogen Idec GmbH, Celgene GmbH, Bristol-Myers Squibb GmbH & Co. KGaA, Hexal-Sandoz GmbH, Janssen-Cilag GmbH, Leo Pharma GmbH, Lilly Deutschland GmbH, MSD Sharp & Dohme GmbH, Novartis, Pfizer Deutschland GmbH, Sanofi Deutschland, Takeda, UCB Pharma GmbH. S. Schneider-Burrus has been an advisor and/or received speakers' honoraria and/or received grants and/or participated in clinical trials of the following companies: Abbvie, Biogen IDEC GmbH, Böhringer-Ingelheim, Moonlake Immunotherapeutics, Novartis Pharma GmbH, Sanofi-Aventis, UCB. D. Wilsmann-Theis has been an advisor, speaker or investigator for Abbvie, Almirall, Amgen, Biogen, Boehringer Ingelheim, Bristol Myers Squibb, Celgene, GlaxoSmithKline, Hexal, Incyte, Janssen-Cilag, Leo Pharma, Eli Lilly, Medac, Merck Sharp & Dohme Corp., MoonLake, Novartis, Pfizer, UCB Pharma. R. Mössner has been an advisor and/or received speakers' honoraria and/or received grants and/or participated in clinical trials of the following companies: AbbVie, Almirall, Biogen IDEC GmbH, Böhringer-Ingelheim, Celgene, Janssen-Cilag GmbH, Leo Pharma GmbH, Eli Lilly and Company, Merck Serono GmbH, MSD SHARP & DOHME GmbH, Novartis Pharma GmbH, Pfizer GmbH, UCB. C. Kromer has been an advisor and/or received speaker's honoraria from AbbVie, Janssen-Cilag, Novartis, Boehringer Ingelheim, Dermapharm. F. G. Bechara has received honoraria for participation in advisory boards, in clinical trials, and/or as a speaker from AbbVie Inc., AbbVie Deutschland GmbH & Co. KG, Acelyrin, Beiersdorf, Boehringer Ingelheim Pharma GmbH & Co. KG, Celltrion, Dr. Wolff, Incyte Corporation, Janssen-Cilag GmbH, Johnson & Johnson, Merck, Mölnlycke, MoonLake, Novartis Pharma GmbH, Sanofi, Sitala, UCB Pharma. N. Abu Rached received funding, travel support, and/or personal honoraria for lectures from Novartis Pharma, Janssen-Cilag GmbH and Johnson & Johnson that were independent of the work submitted. W. K. Peitsch served as advisory board member for and/or obtained speakers' honoraria from and/or received support for attending meetings from and/or obtained support for conferences at her institution from and/or participated in clinical trials by the following companies: AbbVie, ALK-Abello, Almirall Hermal, Amgen, Beiersdorf, Biogen, BMS, Boehringer Ingelheim, Celgene, Dermapharm, Dermasence, Galderma, GSK, Immunocore, Janssen-Cilag, Kyowa Kirin, L'Oreal, La Roche-Posay, LEO Pharma, Lilly, MSD, Mylan, Novartis, Pfizer, Pierre Fabre, Regeneron, Roche, Sanofi, Sun Pharma, UCB Pharma, Viatris. L. C. Schneider obtained support for attending congresses and/or speaker's honoraria from AbbVie, Janssen-Cilag, UCB Pharma. D. Gross was an advisor for, received speakers' honoraria and/or grants from, and/or participated in clinical trials for AbbVie, Almirall, Beiersdorf AG, Biogen, Bristol Myers Squibb, Celgene, Galderma, Janssen-Cilag GmbH, LEO Pharma, MSD, Pfizer, Sanofi-Aventis, UCB Pharma. M. Friedrich received honoraria for participation in advisory boards, clinical trials, or as a speaker from the following: Abbvie, Almirall, Bristol-Myers Squibb, Emphasis, Galderma, Janssen, LEO, Novartis, Sanofi Genzyme, UCB, Viatris. K. Asadullah received honoraria for participation in advisory boards, consultation, clinical trials or as a speaker from: Abbvie, Almirall, Antabio, Bayer, Biofrontera, Celltrion, Bristol-Myers Squibb, Euroimmune, Emphasis, Emeritipharma, Galderma, Hexal, Janssen, La Roche-Posay, LEO, L'Oréal, Novartis, Parexel International, Pierre Fabre, Roxall, RG, Sandoz, Sanofi Genzyme, TFS Trial Form Support, UCB. R. Sabat has received research grants, clinical trial contracts, scientific awards, or honoraria for consulting, participation in advisory boards, or lectures from one or more of the following: AbbVie, Almirall Hermal, Amgen, Bayer Schering Pharma, Boehringer Ingelheim Pharma, Bruno Bloch Stiftung, Celgene/Amgen, Celgene/Bristol-Myers Squibb, Charité Research Organization, CSL Behring, ICON, IQVIA RDS, Incyte, Janssen-Cilag/Janssen Research & Development, MoonLake Immunotherapeutics, Novartis Pharma, Parexel, Rheinischen Friedrich-Wilhelms-Universität Bonn, Sanofi–Aventis, TFS, UCB Biopharma, Universitätsmedizin Greifswald, Wundnetz Berlin-Brandenburg e. V. G. Cugno, K. Assaf, A. Happ, V. Siddi, D. Kubitzki, and S. Vandersee report no conflict of interest regarding this manuscript. This anonymous survey was approved by the local ethics review board of the Charité University Medicine (Charité Ethikkommission; reference number: EA4/205/22, positive statement from February 8, 2023). The study was registered in the German Register of Clinical Trials (study number: DRKS00031572). Not applicable (anonymous study). The questionnaires used in this study and data underlying this article will be shared upon request according to the legal possibilities by the corresponding author.