Learn more about the GRIDD and PRIDD projects in this episode of Coffee and Community, as host Holly Priebe speaks with Allison Fitzgerald, Director of Operations for GlobalSkin. The GRIDD and PRIDD projects are aimed at improving quality of life for individuals living with skin diseases, including cutaneous lymphoma. Allison and Holly discuss the importance of patient-centric data, the development of an app for tracking the impact of skin diseases, and the future plans for research and advocacy. The conversation also addresses patient privacy concerns and the significant role of mental health in managing skin conditions.
- To review the seven publications produced and published by GlobalSkin visit their website at Resources & Publications (https://globalskin.org/research/resou...)
- To download and begin using the PRIDD app visit the PRIDD website at Download App | PRIDD (https://www.pridd.org/en/download-app)
On September 25, 2024, the Patient-Reported Impact of Dermatological Diseases (PRIDD) was launched by GlobalSkin. There are two very important “firsts” associated with the launch of PRIDD. It is the first dermatology impact measure that has been fully validated and can be used for all types of skin conditions. It is also the first patient-reported outcome measure (PROM) in dermatology that was created and validated in collaboration with patients.
Current dermatology measures don't fully capture the impact of skin conditions, and existing PROMs aren't suitable for measuring the burden across all skin conditions. It measures important aspects of how skin disease impacts four main areas of one’s life: social, psychological, physical, and life responsibilities. Each of these areas has 4 distinct questions, for a total of 16 questions. It should take no more than 5 minutes to complete.
Why It Matters
PRIDD is important on multiple levels. It improves the understanding of how skin diseases affect people, helps doctors communicate with patients, and allows for collaborative decision-making. By putting patients' experiences at the forefront, PRIDD helps guide healthcare decisions. Patients can use PRIDD to monitor their disease progression over time, as each survey produces a score that measures the impact of their skin disease as a whole (summary score) and then calculates separate scores for each of the four main aspects of life listed above. These scores are stored so comparisons can be made over time. It can also be used in various ways in clinical trials, and it can help to promote meaningful discussions during medical appointments.
PRIDD is now accessible for clinicians and patients to utilize during dermatology consultations to assist with evaluations and collaborative decision-making. PRIDD can be downloaded from the App store or Google Play to smart phones and tablets and to a personal computer via the browser link on the PRIDD website or with this link: https://www.my.pridd.org/en/Public/Index/6915.
It is free, quick, and easy to use.
As the GlobalSkin organization explored how it and its member organizations could improve their advocacy efforts for their constituents, it became clear patient-reported data was key. However, while decision makers and Health Technology Assessments (HTA) see the value in patient-reported data, most of what existed at the time was anecdotal, and decision making criteria requires measurable data.
GlobalSkin and its member patient leaders asked: What if there was a quality of life measurement tool that was developed by patients? What if a credible patient voice could be built upon verifiable data? And, what might it mean if policymakers wouldn’t ever make a decision without including a patient-led measure?1
Thus began the multi-year project to develop the Patient-Reported Impact of Dermatological Diseases (PRIDD). From the very beginning, PRIDD was built with patient involvement, beginning with a survey of over 2490+ patients globally to find out how dermatological conditions impact their lives. From the 263 unique impacts that were shared across all conditions, the researchers refined the survey down to 16 questions which capture data related to the impact of dermatological conditions on the physical, psychological, social, and life responsibilities areas of a patient’s life.
In order to be introduced as a credible tool for collecting patient-reported data for clinicians and researchers, PRIDD underwent evaluation by COSMIN - the “gold” standard for evaluating health measurement tools.2 In five of the seven areas tested by COSMIN, PRIDD scored as high, if not higher, than other existing skin-related measures currently used by the medical and research community. The two remaining areas require additional data before the COSMIN evaluation can be completed, which is where GRIDD comes in.
1 Source: GRIDD Presentation - GlobalSkin Elevate 2023 Conference - https://youtu.be/yHXuiCvt_fo
2 Source: COSMIN website - https://www.cosmin.nl/