Patient-assigned health utility values for controlled anduncontrolled pemphigus vulgaris and foliaceus

Background The assessment of health-related quality of life (HRQoL) in patients with pemphigus is now of increasinginterest due to the availability of highly effective new therapies. Preference-based HRQoL values or health utilitiesrequired for medical and financial decision-making are not yet available directly from pemphigus patients.Objective To obtain health utility values for current health and hypothetical health states from the perspective of pem-phigus patients.Methods A cross-sectional questionnaire survey was carried out with pemphigus patients. Disease severity was ratedby Autoimmune Bullous Skin Disorder Intensity Score (ABSIS). Patients were asked to evaluate their current health aswell as three common hypothetical pemphigus health states [uncontrolled pemphigus vulgaris (PV), uncontrolled pem-phigus foliaceus (PF) and controlled PV/PF] by using composite time trade-off (cTTO). Multiple regression was applied toexplore determinants of utility values.Results Responses of 108 patients (64.8% women, mean age 57.4 years) were analysed. Mean ABSIS score was11.6. The mean utility values for the hypothetical uncontrolled PV, uncontrolled PF and controlled PV/PF health stateswere 0.41, 0.52 and 0.66 with cTTO. The mean cTTO scores for current health were higher compared with the hypotheti-cal health states (0.76; P < 0.001). Patients with higher ABSIS, worse pain intensity scores and those having a caregiverreported lower utility values for current health (P < 0.05).Conclusions In pemphigus, HRQoL impairment expressed in utility values seems to be considerable, especially incomparison with other chronic dermatological conditions (e.g. psoriasis, atopic eczema, chronic hand eczema). Thesehealth utilities inform physicians, policymakers and funders about the overall extent of health loss in pemphigus and pro-vide evidence to guide medical decisions and cost-effectiveness analyses of treatment strategies. Future research isneeded to evaluate the caregiver burden in pemphigus.