Assessing the Quality of Life of Patients with Epidermolysis Bullosa: Application of the Delphi Method to Develop a Patient-Centred Questionnaire

Epidermolysis Bullosa is a rare disease that seriously affects the Quality of Life (QoL) of patients and their caregivers and can sometimes constitute an unbearable burden for them. The primary aim of this study was to focus on the patients’ experience, capture their point of view and understand their needs in order to develop a QoL questionnaire. The Delphi method was chosen as the most appropriate for this purpose, even if preferring a modified version of the classic procedure, alternating moments of group sharing with private moments of individual compilation covered by anonymity. After four Delphi rounds, the consensus was reached on a questionnaire with 87 items grouped into even domains suitable for understanding the various aspects of quality of life impacted by the disease. This proposal may be a valid aid for clinicians to understand the patient’s needs and identify the areas they are more concerned about; moreover, it may allow them to follow the patients over time and evaluate the impact of any treatments.