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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, P V; Zouboulis, C C; Tomas-Aragones, L; Jemec, G B; Svensson, A; Manolache, L; Tzellos, T; Sampogna, F; Pustisek, N; van der Zee, H H; Marron, S E; Spillekom-van Koulil, S; Bewley, A; Linder, D; Abeni, D; Szepietowski, J C; Augustin, M; Finlay, A Y.
Afiliación
  • Chernyshov PV; Department of Dermatology and Venereology, National Medical University, Kiev, Ukraine.
  • Zouboulis CC; Departments of Dermatology, Venereology, Allergology and Immunology, Dessau Medical Center, Brandenburg Medical School Theodor Fontane, Dessau, Germany.
  • Tomas-Aragones L; Department of Psychology, University of Zaragoza, Zaragoza, Spain.
  • Jemec GB; Department of Dermatology, Zealand University Hospital, Roskilde, Denmark.
  • Svensson A; Health Sciences Faculty, University of Copenhagen, Copenhagen, Denmark.
  • Manolache L; Department of Dermatology and Venereology, Skane University Hospital, Malmö, Sweden.
  • Tzellos T; Dermatology, Dali Medical, Bucharest, Romania.
  • Sampogna F; Department of Dermatology, Faculty of Health Sciences, University Hospital of North Norway, Troms, Norway.
  • Pustisek N; Department of Clinical Medicine, UiT The Arctic University of Norway, Tromsø, Norway.
  • van der Zee HH; Clinical Epidemiology Unit, IDI-IRCCS, Rome, Italy.
  • Marron SE; Children's Hospital Zagreb, Medical School, University of Zagreb, Zagreb, Croatia.
  • Spillekom-van Koulil S; Department of Dermatology, Erasmus University Medical Center, Rotterdam, The Netherlands.
  • Bewley A; Department of Dermatology, Royo Villanova Hospital, Aragon Psychodermatology Research Group (GAI+PD), Zaragoza, Spain.
  • Linder D; Department of Medical Psychology, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, The Netherlands.
  • Abeni D; Whipps Cross University Hospital, London, UK.
  • Szepietowski JC; The Royal London Hospital, London, UK.
  • Augustin M; Unit of Dermatology, Ben Gurion University of the Negev, Beer-Sheva, Israel.
  • Finlay AY; Clinical Epidemiology Unit, IDI-IRCCS, Rome, Italy.
J Eur Acad Dermatol Venereol ; 33(9): 1633-1643, 2019 Sep.
Article en En | MEDLINE | ID: mdl-31037773
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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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Hidradenitis Supurativa / Acné Vulgar / Rosácea Tipo de estudio: Clinical_trials / Guideline / Qualitative_research Aspecto: Patient_preference Límite: Humans País/Región como asunto: Europa Idioma: En Revista: J Eur Acad Dermatol Venereol Asunto de la revista: DERMATOLOGIA / DOENCAS SEXUALMENTE TRANSMISSIVEIS Año: 2019 Tipo del documento: Article País de afiliación: Ucrania Pais de publicación: Reino Unido
Texto completo
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Hidradenitis Supurativa / Acné Vulgar / Rosácea Tipo de estudio: Clinical_trials / Guideline / Qualitative_research Aspecto: Patient_preference Límite: Humans País/Región como asunto: Europa Idioma: En Revista: J Eur Acad Dermatol Venereol Asunto de la revista: DERMATOLOGIA / DOENCAS SEXUALMENTE TRANSMISSIVEIS Año: 2019 Tipo del documento: Article País de afiliación: Ucrania Pais de publicación: Reino Unido