Innovative Visual Tool for Assessing Burden of Hidradenitis Suppurativa Being Evaluated
It is hoped that use of the tool will help to improve the management of HS and enhance patients’ feeling of control over their illness. Credit: Asja Prohic
Use of the HIDRAdisk is currently under psychometric validation in individuals with varying degrees of hidradenitis suppurativa (HS) as a means of offering dermatologists a quick and easy response during routine clinical practice or clinical studies. This innovative visual tool was evaluated at 2 roundtable meetings, with the results published in the Journal of the European Academy of Dermatology and Venereology.
Development of the HIDRAdisk was based on the assumption that the use of visual instruments, completed by the patient along with his or her dermatologist, might encourage verbalization of the key disease-related aspects relevant for patients, thus facilitating the patient-physician relationship and providing some degree of control over the course of the disease.
A clinical psychologist who served as the facilitator conducted 2 distinct roundtables. The first meeting included 9 patients (6 women, 3 men; 19 to 55 years of age) who had HS for ≥24 months. The other roundtable meeting included 10 dermatologists (6 of whom were women) with well-documented experience in the impact of chronic skin diseases on patients' quality of life. The patients and the physicians were both highly interested in the development of a new tool, had knowledge of HS, and were motivated to share their experience and knowledge.
Questions asked by the facilitator during the meetings involved the patients' emotions, expectations, and interpretations related to HS, as well as the effect of the disease on their daily life and social relationships. Items on the questionnaire were divided into 10 dimensions, with each dimension involving 2 to 6 items, for an overall total of 35 items. Patients and physicians rated their degree of consent with each statement using a 5-point Likert scale (1=highest disagreement to 5=complete agreement).
Ultimately, the 10 identified dimensions were revised, with only those items with a positive consensus from both patients and physicians chosen. HIDRAdisk was designed to be completed by the patient along with the dermatologist, thus fostering the lines of communication between them. Because it is a visual instrument, with all responses shown graphically through a polygon, HIDRAdisk provides an immediate picture of the burden of disease, thus permitting patients and physicians to visualize the course of HS over time.
The HIDRAdisk is currently being evaluated in 140 patients with varying levels of HS severity, with outcomes from this visual tool correlating with outcomes from the Dermatology Life Quality Index and the Skindex-16. The HIDRAdisk will be developed for use on electronic devices. It is hoped that use of the tool will help to improve the management of HS and enhance patients' feeling of control over the illness.
Chiricozzi A, Bettoli V, De Pità O, et al. HIDRAdisk: an innovative visual tool to assess the burden of hidradenitis suppurativa [published online June 12, 2018]. J Eur Acad Dermatol Venereol. doi: 10.1111/jdv.15122