Quality of life measurement in rosacea. 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

P V Chernyshov; A Y Finlay; L Tomas-Aragones; M Steinhoff; L Manolache; N Pustisek; C Dessinioti; A Svensson; S E Marron; A Bewley; C Salavastru; B Dréno; A Suru; D Koumaki; D Linder; A W M Evers; D Abeni; M Augustin; S S Salek; A Nassif; V Bettoli; J С Szepietowski; C C Zouboulis

doi:10.1111/jdv.18918

Quality of life measurement in rosacea. 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

J Eur Acad Dermatol Venereol. 2023 May;37(5):954-964. doi: 10.1111/jdv.18918. Epub 2023 Feb 6.

Authors

P V Chernyshov¹, A Y Finlay², L Tomas-Aragones³, M Steinhoff^{4

5

6

7

8

9}, L Manolache¹⁰, N Pustisek¹¹, C Dessinioti¹², A Svensson¹³, S E Marron¹⁴, A Bewley^{15

16}, C Salavastru¹⁷, B Dréno¹⁸, A Suru¹⁷, D Koumaki¹⁹, D Linder²⁰, A W M Evers²¹, D Abeni²², M Augustin²³, S S Salek²⁴, A Nassif²⁵, V Bettoli²⁶, J С Szepietowski²⁷, C C Zouboulis²⁸

Affiliations

¹ Department of Dermatology and Venereology, National Medical University, Kiev, Ukraine.
² Division of Infection and Immunity, School of Medicine, Cardiff University, Cardiff, UK.
³ Department of Psychology, University of Zaragoza, Zaragoza, Spain.
⁴ Department of Dermatology and Venereology, Hamad Medical Corporation, Doha, Qatar.
⁵ Dermatology Institute, Academic Health System, Hamad Medical Corporation, Doha, Qatar.
⁶ Translational Research Institute, Academic Health System, Hamad Medical Corporation, Doha, Qatar.
⁷ Weill Cornell Medicine-Qatar, Doha, Qatar.
⁸ Medical School, Qatar University, Doha, Qatar.
⁹ School of Medicine, Weill Cornell University, New York, New York, USA.
¹⁰ Dermatology, Dali Medical, Bucharest, Romania.
¹¹ Children's Hospital Zagreb, Zagreb, Croatia.
¹² Department of Dermatology, Andreas Syggros Hospital, University of Athens, Athens, Greece.
¹³ Department of Dermatology and Venereology, Skane University Hospital, Malmö, Sweden.
¹⁴ Department of Dermatology, Royo Villanova Hospital, Aragon Psychodermatology Research Group (GAI+PD), Zaragoza, Spain.
¹⁵ Whipps Cross University Hospital, London, UK.
¹⁶ The Royal London Hospital, London, UK.
¹⁷ Department of Paediatric Dermatology, Colentina Clinical Hospital, "Carol Davila" University of Medicine and Pharmacy, Bucharest, Romania.
¹⁸ INSERM, Immunology and New Concepts in ImmunoTherapy, INCIT, Nantes Université, Univ Angers, Nantes, France.
¹⁹ Department of Dermatology and Venereology, University Hospital of Heraklion, Heraklion, Crete, Greece.
²⁰ University Clinic for Medical Psychology and Psychotherapy, Medical University of Graz, Graz, Austria.
²¹ Institute of Psychology, Health, Medical, and Neuropsychology Unit, Leiden University, Leiden, The Netherlands.
²² Clinical Epidemiology Unit, IDI-IRCCS, Rome, Italy.
²³ Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
²⁴ School of Life & Medical Sciences, University of Hertfordshire, Hatfield, UK.
²⁵ Institut Pasteur, Paris, France.
²⁶ Department of Medical Sciences, Section of Dermatology, University of Ferrara, Ferrara, Italy.
²⁷ Department of Dermatology, Wroclaw Medical University, Wroclaw, Poland.
²⁸ Departments of Dermatology, Venereology, Allergology and Immunology, Dessau Medical Center, Brandenburg Medical School Theodor Fontane and Faculty of Health Sciences Brandenburg, Dessau, Germany.

PMID: 36744752
DOI: 10.1111/jdv.18918

Abstract

The European Academy of Dermatology and Venereology (EADV) Task Forces (TFs) on Quality of Life (QoL) and Patient-Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa (ARHS) do not recommend the use of any generic instrument as a single method of Health Related (HR) QoL assessment in rosacea, except when comparing quimp (quality of life impairment) in rosacea patients with that in other non-dermatologic skin diseases and/or healthy controls. The EADV TFs on QoL and Patient-Oriented Outcomes and ARHS recommend the use of the dermatology-specific HRQoL instrument the Dermatology Life Quality Index (DLQI) and the rosacea-specific HRQoL instrument RosaQoL in rosacea patients. The DLQI minimal clinically important difference may be used as a marker of clinical efficacy of the treatment and DLQI score banding of 0 or 1 corresponding to no effect on patients' HRQoL could be an important treatment goal. This information may be added to consensuses and guidelines for rosacea.

MeSH terms

Acne Vulgaris*
Dermatology*
Hidradenitis Suppurativa* / therapy
Humans
Quality of Life
Rosacea* / therapy
Venereology*