International Dermatology Outcome Measures (IDEOM) Group 2016 New York Meeting: Meeting Summary and Data from the Psoriasis Working Group
August 2017 | Volume 16 | Issue 8 | Original Article | 770 | Copyright © August 2017
Lourdes M. Perez-Chada MD,a* Sanminder Singh BS,b* Kristina Callis-Duffin MD MS,c Amit Garg MD,d Alice B. Gottlieb MD PhD,e John Latella,f April W. Armstrong MD MPH,b†and Joseph F. Merola MD MMSca,gâ€
aHarvard Medical School, Boston, MA bUniversity of Southern California Keck School of Medicine, Los Angeles, CA cUniversity of Utah, Salt Lake City, UT dHofstra Northwell School of Medicine, New Hyde Park, NY eNew York Medical College, Valhalla, NY fInternational Dermatology Outcome Measures (IDEOM), Windsor, CT gDepartment of Dermatology and Department of Medicine, Division of Rheumatology, Brigham and Women’s Hospital, Boston, MA *Co-first authors †Co-senior authors
Abstract
The International Dermatology Outcome Measures (IDEOM) Group was established to develop validated and standardized patient-centered outcome measures in dermatology that meet the needs of stakeholders and can be used in clinical practice as well as clinical research. At this meeting, we aimed to define the final core domain set to be assessed in psoriasis clinical research and to identify which of the current psoriasis assessment instruments appropriately address those domains. Specifically, we sought to ascertain stakeholder input on domain match and feasibility of multiple psoriasis instruments. We presented 19 physician-reported and 23 patient-reported outcome measures at the meeting. Stakeholders anonymously voted on the validity and feasibility of each instrument. Validity was rated as: green (good), amber (fair), red (poor), and white (not enough information). Feasibility was rated as: green (feasible), amber (concerns about some aspects of feasibility), red (not feasible), and white (not enough information). Eighteen physician-reported and 20 patient-reported instruments received a favorable green or amber rating for validity from the majority of voters. Seventeen physician-reported and 19 patient-reported instruments received a green or amber rating for feasibility from the majority of voters. A significant proportion of the psoriasis instruments received a good or fair vote for measuring their intended psoriasis domains in a feasible manner. We will continue to refine our voting methodology and incorporate patient input into our process of defining psoriasis domains and developing validated instruments.
J Drugs Dermatol. 2017;16(8):770-777.
BACKGROUND
The International Dermatology Outcome Measures (IDEOM) initiative was established to address limitations of currently used outcome measures, and incorporate input from key relevant stakeholders (patients, health economists and clinicians from the pharmaceutical industry, healthcare providers, payers, and regulators) to develop new, standardized, patient-centered clinical outcome measures. IDEOM’s mission statement is ‘‘[To] Establish patient-centered measurements to enhance research and treatment for those with dermatologic disease.’’ The efforts done to date to address this gap have been published in detail in prior publications, and they are explained brie y below.1-3 IDEOM’s initial framework of identifying core domains is adapted from the Outcome Measures in Rheumatology (OMERACT) model.4 Specifically, we sought to identify core domains relevant to specific skin diseases and systematically reviewed their importance through multiple rounds of input from healthcare professionals (HCP) and patients. To do this, IDEOM formed work groups to focus initially on psoriasis (PsO) and hidradenitis suppurativa (HS). At IDEOM’s first meeting in Boston, Massachusetts in January 2013, we performed a thorough needs assessment for relevant disease domains that should be measured for psoriasis, generating a list of 193 items.2 We combined the generated items into 21 domains and a second preliminary Delphi was conducted to assess feasibility of this conceptual model.3 Following feedback from a stakeholder meeting in Rome, Italy in April 2014, we further re ned and reorganized the model to include 20 domains
