Abstract
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 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 vs. 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 the dermatologist (≥20 min; P < 0.05) and more than one quarterly visit to the dermatologist (P < 0.01) were marginally associated with greater patient 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 (negative association, P < 0.01) and, more strongly, satisfaction with information provided by the dermatologist about patient's skin disease (positive association, P < 0.001) were associated with patient involvement in therapy decision and were significantly different in patients with HS vs. 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.