Patients with Hidradenitis Suppurativa Suffer from Low Health-Related Quality of Life as Measured by the Generic 15D Instrument

Abstract

<b><i>Introduction:</i></b> Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease associated with various comorbidities and diminished quality of life (QoL). Among dermatological conditions, HS is reported to most severely diminish QoL. This study aimed to analyse the health-related QoL (HRQoL) of patients with HS in more detail by using generic to disease-specific HRQoL questionnaires. Correlations between the HRQoL measures and HS disease severity measures were assessed. <b><i>Methods:</i></b> We analysed the HRQoL and clinical severity of patients with HS (<i>N</i> = 92) treated in 5 Finnish hospitals using HRQoL measurement tools most often used in dermatological clinics, as well as the generic 15D instrument (standardized and self-administered 15-dimensional measure of HRQoL). The disease severity was assessed using the Hurley stage, International Hidradenitis Suppurativa Severity Score System, and disease severity evaluation by the investigator. <b><i>Results:</i></b> The mean 15D score of HS patients was low and comparable with that of patients with cancers. No correlation was found between HS severity measures and 15D score, indicating that even mild HS has a high impact on HRQoL. <b><i>Conclusions:</i></b> Our findings strengthen the understanding about HS as a debilitating disease and even compared with non-dermatological conditions and highlight the need of comprehensive care of patients with HS.

Prevalence and Characteristics of Hidradenitis Suppurativa in the Northern Finland Birth Cohort 1986 Study: A Cross-sectional Study of 2,775 Subjects

“…The burden of HS is known to be high and parallel to many chronic diseases, such as rheumatoid diseases ( 21 ). Correspondingly in the other Finnish study ( 2 ) patients with HS ( n = 92, patients in tertiary care, evaluated by the generic 15 D questionnaire) had significantly diminished health-related quality of life compared with the general population. It is notable that, in that study, the findings were independent of HS severity ( 2 ).…”

“…Hidradenitis suppurativa (HS) is a chronic, recurrent inflammatory disease of hair follicles, characterized by painful, subcutaneous lesions, most commonly located in the inguinal, axillary and anogenital regions ( 1 ). HS is one of the most distressing diseases in dermatology, with known impact on quality of life ( 2 ). The annual incidence of HS has not been widely studied, and has been reported to be 3.0-6.0/100,000 persons/year in Finland and Minnesota, US.…”

Validation of the Hidradenitis Suppurativa Investigator Global Assessment

“…For this reason, ClinROs may not converge with PRO concepts, which are distal to direct measurement of disease manifestations in patients with HS, particularly at only the 12- to 16-week time point. Indeed, HiSCR and IHS4 have also shown modest convergence with DLQI . Although data from a phase 2 trial were used to assess the psychometric properties, some subgroups had smaller numbers of patients for analysis, which may also have influenced patient-centeredness performance.…”

“…Indeed, HiSCR and IHS4 have also shown modest convergence with DLQI. 13,14,28,29 Although data from a phase 2 trial were used to assess the psychometric properties, some subgroups had smaller numbers of patients for analysis, which may also have influenced patient-centeredness performance. Nonetheless, the proposed HS-IGA is designed to complement PROs to ensure that all relevant aspects of this multifaceted disease deemed important to patients, experts, and other stakeholders are assessed.…”

Outcome Measures for the Evaluation of Treatment Response in Hidradenitis Suppurativa for Clinical Practice

“…Participants who completed the item reduction survey were eligible to participate in e-Delphi consensus rounds. Information provided to participants included the following: (1) summary of the components and scoring methodology of candidate measures, (2) feasibility characteristics of measures for routine practice, and (3) psychometric properties of the measures . Background materials provided to participants are provided in eTables 2, 3, and 4 in the Supplement.…”