Development of Outcome Measures for Hidradenitis Suppurativa

  • Kirby, Joslyn J. (PI)

Project: Research project

Project Details


Hidradenitis suppurativa (HS) is an important inflammatory disease, which affects approximately 1% of adults,and causes painful nodules, draining abscesses, and disfiguring scars that make walking, sitting, and workingdifficult or impossible. Progress to investigate HS is impeded by the lack of comprehensive outcome measuresfor use in trials and clinical care. Existing HS-specific disease severity tools are limited because signs ofdisease damage, such as discoloration and scarring, are either not captured or incorporated into a singlescore. In addition, some tools are impractical or not validated, reliable, or responsive. A disease-specificpatient-reported outcome measure does not exist and given the impact of HS on patient well-being, it is vital toengage patients in outcome measurement. The goal of this proposal is to develop HS-specific measures tosupport accurate disease assessment. The specific aims of the proposed research are: (1) to test thehypothesis that a novel HS-specific patient-reported outcome measure will have substantial validity, reliabilityand responsiveness; (2) to test the hypothesis that a new provider-reported disease severity measure will havesubstantial validity, reliability and responsiveness. Patients with HS, age 18 or older, will be recruited from thePaTH network, an integrated clinical data research network across four Mid-Atlantic health systems, PennState Hershey Medical Center, University of Pittsburgh Medical Center, Johns Hopkins Medical Center, andTemple Health System. The patients in the PaTH network are diverse; over 25% are non-white; 20% havepublic insurance or no insurance. The development and validation process will be based on the NIH PROMISInstrument Development and Validation Scientific Standards. Briefly, we will include stakeholders, patients andproviders, in the development and refinement of the tools. We will rigorously test the psychometric andmeasurement properties, including the reliability and validity, with the input of patients and providers. Finally,we will focus on evaluating the responsiveness of these novel patient- and clinician-reported outcomemeasures for HS.
Effective start/end date9/1/168/31/20


  • Agency for Healthcare Research and Quality: $160,835.00


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