It’s time to rise above the noise level
Our participation in the GRIDD survey is critically important to the PRP global community. GRIDD is an opportunity for all of us to document the impact pityriasis rubra pilaris on your own lives.
1. Physical impacts, e.g., pain, itch, mobility, vision, sleep, etc.
2. Daily life impacts , e.g., daily routine, leisure, work and school
3. Psychological impacts, e.g., stress, depression, control, coping, etc.
4. Social impacts, e.g., isolation, relationships, people who stare, etc.
5. Financial impacts, e.g., lost wages, affordability of treatments, etc.
6. Medical impacts, e.g., limited access to dermatological services and treatments
If WE don’t share our PRP insights, how will the rest of the world learn about us?
It took eight years to get here,
but it was well worth the effort.
In June 2015, I traveled to Vancouver, Canada to meet with leaders of over 60 global dermatology patient organizations. For several days prior to the official start of the event, I worked closely with seven other patient leaders — two from Canada, two from the UK, one each from France, Nigeria and Pennsylvania. Our goal was to discuss the creation of an international alliance and how best to present it to our fellow delegates.
Early on the first day I remember seeing a chart from the World Health Organization. It was labeled: Mortality and burden of disease and listed 25 causes of mortality and burden. The first two causes on the list were cardiovascular diseases (#1) and cancers (#2). That sounded reasonable. The last two causes on the list were conflict/terrorism (#24) and natural disasters (#25). OK, I thought.
Then I finally found the listing for skin diseases (#19).
It was then explained that the DALY chart is based on a formula that allow policymakers and experts to evaluate the level of burden a particular disease might have on a given population and then recommend appropriate healthcare policy improvements.
Said another way, healthcare policymakers using the DALY analysis will determine the relative impact of skin conditions to be considerably lower than most other diseases…or at lease 18 others.
Fortunately, by week’s end, those in attendance unnanimously signed the Vancouver Resolution and set in motion the creation of the International Alliance of Dermatology Patient Organizations (IADPO) and started a journey that would bring us GRIDD.
Why GRIDD?
Over two billion people live with over 3,000 different dermatological conditions? PRP is one of 800 rare skin disorders.
People with dermatology conditions like PRP often face stigma, shame, and other psychosocial challenges in addition to the physical symptoms of their disease. We struggle with access to care and treatment because decision-makers perceive the relative impact of these conditions to be considerably lower than most other diseases. We often suffer mental health issues, avoid social activities, and miss work due to the challenges of PRP.
Global rankings of diseases, such as the Disability Adjusted Life Years (DALY), place dermatology relatively low thereby inferring that these conditions do not have a significant impact on the quality of life for sufferers. This is simply neither accurate nor fair for dermatology patients like us. The data produced by GRIDD will play a vitally important role in addressing this low disease ranking as well as the widely acknowledged weaknesses of the Dermatology Life Quality Index (DLQI).
GRIDD is also a response to the World Health Organization’s (WHO) Global Burden of Disease (GBD) initiatives which have also underestimated the toll of living with a dermatology condition like PRP. Data from the GBD projects are used to identify patient needs, develop policies, and determine resource-allocation and research priorities on a global scale.
GRIDD aims to collect global data on the impact of dermatological conditions on patients’ lives to challenge the current burden estimates. To collect this impact data, GlobaslSkin has developed the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure, a scientifically sound questionnaire capable of measuring the impact of dermatological conditions from the patient’s perspective.
GRIDD: Q&A
Who is organizing and funding the GRIDD project?
GRIDD is a project initiated and funded by the International Alliance of Dermatologist Patient Organizations (IADPO). It is being co-led by researchers from Cardiff University (Professor Chris Bundy) and Hamburg University (Professor Dr. Matthias Augustin)
What is the GRIDD study about?
The GRIDD Study aims to collect global data on the impact of dermatological conditions on patients’ lives. It is the first global, patient-initiated and patient-led impact research project in dermatology and one that measures the true impact of dermatological diseases from the patient perspective.
How can I help!
As someone living with PRP, you are an expert and your opinion matters.
How long will it take me to complete
The survey will take you around 10 to 20 minutes to complete. Don’t worry if you need more time – you can save your answers and login again later.
What should I expect
To meet the ethical requirements of researchers, you will need to read the Patient Information Sheet and give consent before participating in this study.
This is a two-step process:
- You will need to register an account to access the survey.
- You will receive an email with the instructions and link to the survey. (Check your Junk Email folder if you do not receive it directly).
What about my privacy and confidentiality?
Your responses to the survey will be anonymous as we will store your initials and email address separately from your response. We appreciate your time and valuable input into this global dermatology research project.
What are the possible benefits of my participation?
The research findings will help raise awareness among decision-makers, clinicians and researchers. This will, over time, improve the experience of patients and help us to understand how to improve care and treatment of people living with a dermatological condition like PRP.
How will my information be kept confidential?
All electronic data will be kept on a password-protected server in accordance with the European Data Protection Act and will only be accessible to the research team and regulatory authorities.