gms | German Medical Science

Background and status of (inter)national research: Global Research on the Impact of Dermatological Diseases (GRIDD) is the first systematic, international patient-initiated and patient-led multi-year study of the impact of living with dermatological conditions

Question and objective:To develop the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure.

Method or hypothesis:

• Phase 1 – Systematic Review (SR) of existing dermatology-specific patient-reported measures.
• Phase 2 – Concept elicitation study: Interviews and focus groups were conducted with patients from all continents.
• Phase 3 – Delphi surveys of patients determined whether the concepts identified in phase 2 are valid and endorsed by a wider group.
• Phases 4/5 – Cognitive interviews to confirm understanding and psychometric analysis of the properties of the final instrument. The new PRIDD measure will be launched and the data disseminated.

Results: Our SR revealed no specific measure of patient impact in dermatology exists. Examination of 36 existing patient-reported measures identified poor psychometric properties and/or measures were developed without adequate patient involvement. None could be recommended for use based on gold-standard COSMIN criteria. The concept elicitation study included 63 people (68% female, across 29 dermatological conditions). Findings suggest impact is a multifaceted concept consisting of physical, psychological, social, and financial functioning as well as burdensome daily responsibilities and challenging healthcare issues, these concepted formed the basis of PRIDD. The validity of the concepts were tested in a Delphi study. Round 1 included 1154 participants from 66 countries representing 90 conditions. Through quantitative and qualitative analysis, the number of items was amended and deleted based on the consensus criteria. Currently, round 2 of Delphi is being prepared.

Discussion: GRIDD was designed to meet the COSMIN criteria for health-related instruments. Our SR revealed that existing measures cannot be recommended for use as a measure of impact, justifying the need to develop PRIDD with patient engagement at each phase. Content validity is considered the most important measurement property in patient-reported outcome measures and is therefore fundamental to the development of a scientifically robust instrument. In Phase 2 and 3, we worked with a relatively large sample of patients to develop and prioritise concepts for inclusion in PRIDD, thereby strengthening content validity. The next phase of GRIDD is to conduct cognitive interviews to test whether PRIDD is comprehensible, comprehensive and relevant to patients.

Practical implications: PRIDD supports local, regional and international attempts 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 will address shortcomings in the Global Burden of Disease metric and enhance patient perspectives in dermatology by providing quantifiable patient-impact data.