par Thorlacius, Linnea Rishøj L.;Garg, Amit X;Riis, Peter Theut;Nielsen, Sabrina Mai;Bettoli, Vincenzo;Ingram, John Robert;Del Marmol, Véronique
;Matusiak, Łukasz L.;Pascual, José Carlos;Revuz, Jean;Sartorius, Karin;Tzellos, Thrasivoulos;Van der Zee, Hessel H.H.;Zouboulis, Christos C.C.;Saunte, Ditte Marie Lindhardt D.M.;Gottlieb, Alice Bendix;Christensen, Robin;Jemec, Gregor
Référence British journal of dermatology
Publication Publié, 2019-12-01

Référence British journal of dermatology
Publication Publié, 2019-12-01
Article révisé par les pairs
Résumé : | Background: Monitoring disease activity over time is a prerequisite for clinical practice and research. Valid and reliable outcome measurement instruments (OMIs) and staging systems provide researchers and clinicians with benchmark tools to assess the primary and secondary outcomes of interventional trials and to guide treatment selection properly. Objectives: To investigate inter-rater reliability and agreement in instruments currently used in hidradenitis suppurativa (HS), with dermatologists experienced in HS as the rater population of interest. Methods: In a prospective completely balanced design, 24 patients with HS underwent a physical examination by 12 raters (288 assessments) using nine instruments. The results were analysed using generalized linear mixed models. Results: For the staging systems, the study found good inter-rater reliability for Hurley staging in the axillae and gluteal region, moderate inter-rater reliability for Hurley staging in the groin and for Physician's Global Assessment, and fair inter-rater reliability for refined Hurley staging and the International HS Severity Scoring System. For all the tested OMIs, the observed intervals for limits of agreement were very wide relative to the ranges of the scales. Conclusions: The very wide intervals for limits of agreement imply that substantial changes are needed in clinical research in order to rule out measurement error. The results illustrate a difficulty, even for experienced HS experts, to agree on the type and number of lesions when evaluating disease severity. The apparent caveats call for global efforts, such as the HIdradenitis SuppuraTiva cORe outcomes set International Collaboration (HISTORIC) to reach consensus on how best to measure physical signs of HS reliably in randomized trials. |