Article
Development of the Patient-Reported Impact of Dermatological Diseases (PRIDD) measure
Search Medline for
Authors
-
Nirohshah Trialonis-Suthakharan
- Institute for Health Services Research in Dermatology and Nursing, University Medical Center Hamburg-Eppendorf, Hamburg, Germany
-
Rachael Pattinson
- School of Healthcare Sciences, Cardiff University, Cardiff, United Kingdom
-
Maria Jose Valencia Lopez
- Institute for Health Services Research in Dermatology and Nursing, University Medical Center Hamburg-Eppendorf, Hamburg, Germany
-
Jennifer Austin
- International Alliance of Dermatology Patient Organizations, International Alliance of Dermatology Patient Organizations, Ottawa, Canada
-
Christine Bundy
- School of Healthcare Sciences, Cardiff University, Cardiff, United Kingdom
-
Matthias Augustin
- Institute for Health Services Research in Dermatology and Nursing, University Medical Center Hamburg-Eppendorf, Hamburg, Germany
| Published: | September 30, 2022 |
|---|
Outline
Text
Background and status of (inter)national research: Dermatological conditions are widely prevalent worldwide and have a physical, psychological, and social burden for patients. Existing patient-reported outcome measures (PROMs) do not comprehensively capture the full impact that patients experience due to their skin conditions and thus, underestimate it.
Research question and objective: The Global Research on the Impact of Dermatological Diseases (GRIDD) team is developing the Patient-Reported Impact of Dermatological Diseases (PRIDD) measure. This tool will measure the full burden of skin diseases, helping to explain patients’ challenges in living with their dermatological conditions and supporting better clinical decision-making.
Method or hypothesis: PRIDD was designed using the novel Global Research of Impact on Patients (GRIP) methodology, and it integrates patient input in each of its phases of development:
- 1.
- A COSMIN systematic literature review identified and evaluated existing dermatology-specific PROMs
- 2.
- The concept elicitation study conducted qualitative interviews to develop the conceptual framework that formed the PRIDD’s item generation.
- 3.
- The Delphi study tested the validity of concepts and prioritized items through a consensus exercise with patients for inclusion in PRIDD.
- 4.
- Cognitive interviews tested PRIDD’s content validity, comprehensibility, comprehensiveness, acceptability and feasibility.
- 5.
- Testing the psychometric properties of PRIDD is underway.
Results: Thirty-six PROMs were identified but none of them met the gold standard for use based on COSMIN criteria, primarily due to lack of patient input. The concept elicitation study included 63 participants (29 dermatological conditions) from 29 countries. The conceptual framework showed impact as multifaceted involving physical, psychological, social, financial, and daily functioning elements. The Delphi study reduced the item pool from 263 to 27 items throughout two rounds of consensus surveys of 1,154 participants (90 dermatological conditions) from 61 countries. The results generated the first draft of PRIDD, which was pilot-tested in cognitive interviews produced a 26-item version of PRIDD with evidence on content validity comprehensiveness, acceptability and feasibility from patients.
Discussion: PRIDD was developed in response to the shortcomings in existing PROMS. PRIDD engaged patient in each step which enhanced patient perspectives in dermatology by providing quantifiable, patient-impact data and met the gold-standard COSMIN criteria, providing strong evidence of content validity. The final phase, psychometric testing, is ongoing.
Practical implications: PRIDD supports local, regional and international efforts to better position the dermatology community to be empowered with verifiable, patient-derived data and supportive advocacy tools and resources to collectively take action for a better future for patients.
Appeal for practice (science and/or care) in one sentence: PRIDD measure addresses shortcomings in existing PROMs and enhances patient perspectives in dermatology by providing quantifiable patient-impact data.
Funding: Sonstige Förderung
