Health-Related Quality of Life of Patients with Hidradenitis Suppurativa Measured with the 15D Instrument and Comparison with the General Population and Patients with Psoriasis

Kluger, Nicolas; Sintonen, Harri; Ranta, Martta; Serlachius, Martina

doi:10.1159/000481117

Cited by 13 publications

(16 citation statements)

References 11 publications

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“…A significant difference compared to psoriasis patients was detected on the sexual activity dimension. 64 Patients with HS had significantly decreased EQ-5D scores in all age groups except for 65-74-year-olds. 65 The DLQI was used in parallel with the Major Depression Inventory questionnaire: 66 HRQoL was significantly more impaired in HS patients than in controls, but the rate of depression was not significantly higher in HS patients compared to controls.…”

Section: Comparison Of Qol In Hs Other Diseases and Controlsmentioning

confidence: 82%

“…Compared with an age‐standardized general population, HS patients scored significantly worse on several dimensions of the generic 15D questionnaire. A significant difference compared to psoriasis patients was detected on the sexual activity dimension . Patients with HS had significantly decreased EQ‐5D scores in all age groups except for 65‐74‐year‐olds .…”

Section: Resultsmentioning

confidence: 99%

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Quality of life measurement in hidradenitis suppurativa: position statement of the European Academy of Dermatology and Venereology task forces on Quality of Life and Patient‐Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa

Chernyshov

Zouboulis

Tómas-Aragonés

et al. 2019

Acad Dermatol Venereol

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This paper is organized jointly by the European Academy of Dermatology and Venereology (EADV) Task Force (TF) on Quality of Life (QoL) and Patient‐Oriented Outcomes and the EADV TF on acne, rosacea and hidradenitis suppurativa (ARHS). The purpose of this paper was to present current knowledge about QoL assessment in HS, including data on HS‐specific health‐related (HR) QoL instruments and HRQoL changes in clinical trials, and to make practical recommendations concerning the assessment of QoL in people with HS. HS results in significant quimp that is higher than in most other chronic skin diseases. HS impact in published studies was assessed predominantly (84% of studies) by the Dermatology Life Quality Index (DLQI). There is a lack of high‐quality clinical trials in HS patients where HRQoL instruments have been used as outcome measures. One double‐blind randomized placebo‐controlled trial on infliximab with low number of participants reported significantly better HRQoL improvement in the treatment group than in the placebo group. Well‐designed clinical studies in HS patients to compare different treatment methods, including surgical methods and assessing long‐term effects, are needed. Because of lack of sufficient validation, the Task Forces are not at present able to recommend existing HS‐specific HRQoL instruments for use in clinical studies. The EADV TFs recommend the dermatology‐specific DLQI questionnaire for use in HS patients. The EADV TFs encourage the further development, validation and use of other HS‐specific, dermatology‐specific and generic instruments but such use should be based on the principles presented in the previous publications of the EADV TF on QoL and Patient‐Oriented Outcomes.

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Section: Comparison Of Qol In Hs Other Diseases and Controlsmentioning

confidence: 82%

Section: Resultsmentioning

confidence: 99%

Quality of life measurement in hidradenitis suppurativa: position statement of the European Academy of Dermatology and Venereology task forces on Quality of Life and Patient‐Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa

Chernyshov

Zouboulis

Tómas-Aragonés

et al. 2019

Acad Dermatol Venereol

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“…Although the 15D has been previously used in a small population of 26 patients with HS [18], our study, to the best of our knowledge, is the first one to describe the correlations of this generic instrument with other HRQoL measures and disease severity measures in HS disease. In our study, patients with HS had a 15D total score even lower (0.863) than previously described (0.882 ± 0.083 [18]); the score corresponds to total scores in diseases such as prostate cancer (0.897 and 0.855 for locally advanced and metastatic, respectively [19]), metastatic breast cancer (0.82 [20]), inflammatory bowel disease (0.874 [21]), and axial spondyloarthritis (0.85 [22]). However, comparisons should be made with caution because the sex and age distribution in these populations may differ from our population.…”

Section: Discussionmentioning

confidence: 99%

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

Hirvonen

Pasternack

Lipitsä

et al. 2021

Skin Appendage Disord

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Introduction: 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. Methods: We analysed the HRQoL and clinical severity of patients with HS (N = 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. Results: 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. Conclusions: 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.

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“…Hidradenitis suppurativa can affect QoL in many ways and has consistently been shown to score very high on different health‐related quality‐of‐life instruments 170–177 . Patients with uncontrolled disease often suffer from pain, pruritus and odour production, which can lead to interference of daily functions and disutility 178–181 .…”

Section: Quality Of Lifementioning

confidence: 99%

Hidradenitis suppurativa: an update on epidemiology, phenotypes, diagnosis, pathogenesis, comorbidities and quality of life

Nguyen

Damiani

Orenstein

et al. 2020

Acad Dermatol Venereol

194

248

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Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease that severely impairs patients' quality of life. It is characterized by recurrent painful nodules, abscesses and draining sinus tracts in primarily intertriginous areas. We aimed to review the most up‐to‐date information regarding the epidemiology, clinical presentation, diagnostic studies, pathogenesis, comorbidities and quality of life of patients with hidradenitis suppurativa. We performed a systematic search of Medline, Embase database (from inception to September 2019) and review of bibliographies without restrictions on year or language. HS has an estimated global prevalence of 0.00033–4.1% (but most likely 0.7–1.2% in the European‐US population). Patients still experience a significant diagnostic delay, up to several years. In the absence of pathognomonic tests, the diagnosis of HS is made from clinical observation and the disease narrative. Phenotypic variation renders diagnosis and severity assessment difficult. Ultrasound imaging is an emerging assessment tool for deep‐seated lesions. The Hurley Staging System is still widely used in severity rating. Follicular hyperkeratosis and dilatation, follicular rupture and chronic inflammation with architectural tissue changes have been implicated in the pathogenesis of HS. HS has been associated with metabolic syndrome and other risk factors for cardiovascular disease, diabetes mellitus type II, polycystic ovarian syndrome, depression, suicide and substance use disorders. It has been linked to other immune‐mediated diseases such as inflammatory bowel disease and spondyloarthropathy. Pain, pruritus, malodour, low self‐esteem, sleep and sexual dysfunctions, and poor mental health are chronic symptoms or consequences of uncontrolled disease. HS is an under‐diagnosed and under‐treated disease with a profound negative impact on patients' quality of life. In the light of its associated comorbidities, an interdisciplinary management approach may be needed to ensure the best outcomes.

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Health-Related Quality of Life of Patients with Hidradenitis Suppurativa Measured with the 15D Instrument and Comparison with the General Population and Patients with Psoriasis

Cited by 13 publications

References 11 publications

Quality of life measurement in hidradenitis suppurativa: position statement of the European Academy of Dermatology and Venereology task forces on Quality of Life and Patient‐Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa

Quality of life measurement in hidradenitis suppurativa: position statement of the European Academy of Dermatology and Venereology task forces on Quality of Life and Patient‐Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa

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

Hidradenitis suppurativa: an update on epidemiology, phenotypes, diagnosis, pathogenesis, comorbidities and quality of life

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