HIDRAdisk: an innovative visual tool to assess the burden of hidradenitis suppurativa

Editor Hidradenitis suppurativa (HS) is a chronic relapsing inflammatory dermatosis of the body folds, characterized by nodules, abscesses, sinus tracts and numerous comorbidities, significantly impairing patients' quality of life (QoL).1-5 Among skin diseases, HS has the largest impact on QoL.6 Few specific instruments are available to assess, in a comprehensive, psychosocial perspective, the burden of HS,7 and no qualitative studies exploring the experience of HS patients and their relationship with the physician are currently available. As for PSOdisk,8 the development of HIDRAdisk was based on the assumption that the use of visual instruments, completed by the patient together with the dermatologist, might foster verbalization of the main disease-related aspects relevant for patients, facilitating the patient–physician relationship and conveying some feeling of control over the course of the disease. A mixed methodology has been applied: patient-only and a physician-only focus groups9 were created to capture the experience and perspective of the disease on both sides; a modified Delphi method10 was then applied to assess the level of convergence of both opinions about the items selected and their weight within the disease experience of HS. A clinical psychologist, acting as facilitator, conducted two distinct roundtable meetings: one included nine patients (6 women; aged 19–55 years) affected by HS for ≥24 months, while the other roundtable meeting included ten dermatologists (6 women) with well-documented experience in the research field of the impact of chronic skin diseases on QoL. Both patients and physicians were deeply interested in the development of a new tool, had knowledge of HS and were motivated to share their knowledge and experience. The first endpoint was to identify the most significant aspects of the patients' experiences, with the purpose of selecting the questionnaire items. During the meetings, questions were asked by a facilitator regarding patients' emotions, interpretations and expectations related to HS and the impact of the disease on daily life and social relationships. Items were divided into 10 dimensions; each dimension encompassed 2–6 items for a total of 35 items. Patients and physicians were asked to express their degree of consent on each statement using a 5-point Likert scale (1 = highest disagreement to 5 = complete agreement). A consensus was reached with an agreement of >66%. Items with a lower percentage of agreement were considered as ‘not-solved’ in terms of consensus and eliminated (percentage of agreement shown in Table 1). According to the results obtained by the Delphi procedure, the 10 identified dimensions were revised and only the items with a positive consensus from both patients and physicians were selected. A final meeting with 10 dermatologists chaired by a clinical psychologist acting as facilitator was held to discuss the results obtained. A rewording of the items was performed to further simplify and design an easy questionnaire (Fig. 1). HIDRAdisk is designed to be completed by the patient with the dermatologist, fostering their communication. Being a visual instrument, with the answers shown graphically through a polygon, HIDRAdisk gives an immediate picture of the burden of the disease, allowing patients and physicians to visualize the course of the disease over time. When the burden of disease decreases, the area of the polygon shrinks, providing an immediate and intuitive representation of the progress achieved. HIDRAdisk could help improve the management of the disease and increase patients' feeling of control over their disease. HIDRAdisk is currently under psychometric validation in 140 patients with different degrees of HS severity, correlating the HIDRAdisk outcomes with the Dermatology Life Quality Index and the Skindex-16. The tool will be developed on electronic devices, offering dermatologist a quick and easy response during routine clinical practice or clinical studies. AbbVie participated in the conduct and financial support of the project, as well as in interpretation of the results, review and approval of the manuscript. V. Bettoli, O. De Pità, V. Dini, G. Fabbrocini, G. Monfrecola, M.L. Musumeci, A. Pennella, and L. Atzori declared no conflicts of interest. A. Chiricozzi served as scientific consultant and/or clinical study investigator for AbbVie, Biogen, Eli Lilly Company, Janssen-Cilag, Leo-Pharma, Sanofi Genzyme, Novartis, and speaker for Eli Lilly Company, Janssen, AbbVie, and Novartis. A. Parodi declared the following conflict of interest: Abbvie, MSD, Almirall, Pfizer, Celgene, Novartis, Galderma, Amgen, Abiogen, Janssen?Cilag. F. Sampogna has received consultancy fees from Janssen and Pierre Fabre. F. Buzzulini, G. Gualberti, and U. di Luzio Paparatti are AbbVie employees and may own stocks/options. We wish to thank Daria Nucciarelli for the critical review of this letter to the editor and Valeria Saragaglia for project management.