Development of a Quality-of-Life Measure for Hidradenitis Suppurativa

Abstract

Background: Hidradenitis suppurativa (HS) is a chronic skin disorder with adverse impacts on both physical and psychosocial well-being. There is presently no validated HS-specific quality-of-life (QoL) measure. Objective: The objective of this study is to develop a QoL instrument for HS (HS-QoL) in accordance with recommended standards. Methods: Patient interviews (concept elicitation) and expert input were used to develop the conceptual framework for outcomes perceived important to patients with HS. A HS-QoL-v1 measure was developed, and cognitive interviews with patients were conducted for pilot testing. Results: Concept elicitation interviews with patients with HS (n = 21) generated 12 themes. Most frequently reported were impacts on daily activities and symptoms due to HS. These themes, along with literature review and input from clinical experts, informed development of the HS-QoL-v1. Nine cognitive interviews were conducted in a pilot test and resulted in the HS-QoL-v2 measure. Conclusion: The HS-QoL-v2 is a preliminary QoL instrument for which further psychometric validation and establishment of clinimetric properties will be undertaken.