Patient involvement in treatment decisions is associated with increased therapy satisfaction in Hidradenitis suppurativa

Giorgia Cugno^1,2,3Sylke Schneider-Burrus^4,5Georgios Kokolakis⁵Dagmar Wilsmann-Theis⁶Katharina Assaf⁶Rotraut Moessner⁷Christian Kromer⁷Falk G. Bechara⁸Nessr Abu Rached⁸Wiebke K Peitsch⁹Lisa C Schneider⁹Andreas Happ¹⁰Valentina Siddi¹¹Diana Kubitzki¹²Durdana Groß¹³Markus Friedrich¹Staffan Vandersee¹⁴Khusru Asadullah¹⁵Robert Sabat⁵Kerstin Wolk^5*

• ¹Dermatological practice Dr. Friedrich / Dr. Philipp, Oranienburg, Germany
• ²Clinic for Dermatology and Phlebology, Vivantes Klinikum im Friedrichshain, Berlin, Germany
• ³Center for Translational skin inflammation research, Department of Dermatology, Venereology and Allergology, Charité – Universitätsmedizin Berlin, Berlin, Germany
• ⁴Center for Dermatosurgery, Havelklinik Berlin, Berlin, Germany
• ⁵Translational skin inflammation research, Department of Dermatology, Venereology and Allergology, Charité – Universitätsmedizin Berlin, Berlin, Germany
• ⁶Centre of skin diseases, University Hospital Bonn, Bonn, Germany
• ⁷Department of Dermatology, Venereology, and Allergology, University Medical Center, Göttingen, Germany
• ⁸ICH - International Center for Hidradenitis suppurativa / Acne inversa, Department of Dermatology, Venereology and Allergology, Ruhr-University Bochum, Bochum, Germany
• ⁹Department of Dermatology and Phlebology, Vivantes Klinikum im Friedrichshain, Berlin, Germany
• ¹⁰Department of Dermatology, Klinikum Frankfurt (Oder), Frankfurt (Oder), Germany
• ¹¹Dermatological practice Siddi & Bachmann, Berlin, Germany
• ¹²MVZ Lobetal gGmbH, Bernau bei Berlin, Germany
• ¹³Dermatological practice Dr. Gross, Potsdam, Germany
• ¹⁴Department of Dermatology, Bundeswehr Hospital, Berlin, Germany
• ¹⁵Dermatology Potsdam MVZ, Potsdam, Germany

Background: Hidradenitis suppurativa (HS) is a painful and disfiguring chronic inflammatory skin disease. Despite many efforts over the past decade to improve the care of patients with HS, their satisfaction with medical care remains limited. Aim: The aim of this study was to assess the perceived involvement of patients with HS and, for comparison, patients with psoriasis, in treatment decision-making and to identify areas associated with positive perception. Methods: A prospective, cross-sectional, questionnaire-based survey was conducted between May 2023 and July 2024 in different types of dermatological care facilities in Germany. Patients rated their therapy decision involvement s and treatment satisfaction on a 0-10 scale. Data were stratified by demographic, clinical, and healthcare-related variables. Results: 124 HS patients and 133 psoriasis patients completed the questionnaires. The percentage of HS patients rating their therapy decision involvement as low (values of 0-5) was 27.2%, while the percentage of psoriasis patients who gave the same assessment was 11.9% (P<0.01). Moreover, the average degree of perceived therapy decision involvement was significantly lower for patients with HS compared to psoriasis patients (mean±SD: 7.0±2.9 versus 8.4±2.1; P<0.001). Greater involvement in therapy decisions was linked to higher satisfaction of patients with the therapies received (P<0.01). Younger HS patients (18-40 years) reported lower involvement scores (P <0.01), while gender, education level, disease duration, disease severity, number of comorbidities, type of healthcare facility, and type of therapies undergone had no influence. Extended consultation times with dermatologist (≥20 minutes) (P<0.05) and more than one visit per quarter to dermatologists (P<0.01) were marginally associated with better involvement in decision-making, but did not explain the difference between patients with HS and psoriasis in this regard. Waiting time until first visit to a dermatologist (P<0.01) and, more strongly, satisfaction with information provided by the dermatologist about patient’s skin disease (P<0.001) were associated with patient involvement in therapy decision and were significantly different in patients with HS versus psoriasis. Conclusions: This study shows limited involvement of HS patients in the therapy decision-making process, which was associated with low treatment satisfaction. Improvement may be achieved by training dermatologists in disease mechanisms and patient communication.