Throughout the past six months, the Global Research on the Impact of Dermatological Diseases (GRIDD) team has actively engaged patients around the world in a Delphi process, a key step in developing the Patient-Reported Impact of Dermatological Diseases (PRIDD) measure. Thank you to our patient organizations around the world for their help in making the GRIDD Delphi process a success!
A Delphi is a consensus-seeking method widely used in health research. The main purpose of a Delphi is to explore a topic in a way that goes beyond what is currently known or believed and is based on the assumption that expert group judgments are more valid or accurate than individual judgments or assumptions. It is a scientific process that promotes greater accuracy and validates previous data-derived assumptions.
The GRIDD Delphi was comprised of two consecutive surveys, targeted at adults (over 18 yrs.) diagnosed with a dermatological condition. The surveys were available in multiple languages: English, French, Spanish, German, Mandarin (simplified Chinese), and Arabic.
On June 3, the GRIDD Delphi concluded. In Delphi #1, which took place December-January, 1154 patients from 61 countries, representing 90 diseases completed 263 questions about the impact of their dermatological diseases. In Delphi #2, which took place May-June, 493 of the original respondents completed the significantly refined and reduced 76-question questionnaire.
Results of the Delphi, along with previous GRIDD research, identified multiple important ways that dermatological conditions affect patients’ lives. We want to understand how important each of these impacts are to patients’ quality of life.
This information is essential information for the development of PRIDD. This new measurement tool will allow us to collect data that shows what it is really like to live with a dermatological condition, thus helping dermatology patient organizations advocate for better access to treatments and appropriate healthcare for patients globally.
Item reduction is now complete (~33 items down from 76 items in Delphi 2 and 263 items in Delphi 1) and the pilot version of PRIDD is in currently undergoing review and approvals.
Next Steps of the GRIDD project are as follows:
1. Cognitive Interviews
Cognitive interviews with approx. 30 patients to test the comprehensibility, relevance, comprehensiveness, acceptability, and feasibility of PRIDD: Use data gathered from patients to test how PRIDD performs as a statistical tool and make refinements accordingly.
What this means: July/August 2021: Several patient organizations will be asked to help us find 30 patients to participate in Cognitive Testing interviews.
- GlobalSkin will be reaching out to a number of Patient Organizations to help facilitate patient participation in cognitive interviews – if you are interested in taking part please contact the This email address is being protected from spambots. You need JavaScript enabled to view it..
2. Psychometric Testing:
Statistical refinements: Use data gathered from patients to test how PRIDD performs as a statistical tool and make refinements accordingly.
What this means: Oct./Nov. 2021: All patient organizations will be asked to encourage their patients to participate in Psychometric Testing surveys
Testing of measurement properties: Establish PRIDD’s quality through its measurement properties and understand what scores mean.
What this means: Early-2022: All patient organizations will be asked to encourage their patients to participate in Psychometric Testing surveys – test/re-test.
3. Translation
Translation will take place after the completion and validation of the PRIDD measure (back translation and validation).
Benefits to your patient organization
- Increased credibility through evidence-based advocacy
- Outreach opportunities through multiple contact points with members/patients
- Media relations using facts to tie to your patient stories
- Boost your fundraising with: companies, patients, and families
- You and your patients will be a key part of the Global Skin Movement
To learn more, please watch the GRIDD presentation on our YouTube Channel. GlobalSkin will also be hosting a webinar this fall to explain the psychometric testing in more detail. Invitations will be sent to member organizations.
Together, we will strengthen the voice of patients through data!