The Future of Eczema: Patient Reported Outcomes
When you see a health care provider now-a-days, it is likely that they will survey you after a visit to hear about your experience (think of existing tools like Yelp).
Doctor’s office survey questions
Like any industry, the medical world wants your feedback. However, most of the time you are asked questions like:
- How easy was it to schedule your appointment?
- Would you recommend this practice to your friends and family?
- How easy was it for you to find parking?
Quantifying patient experience
While all of these questions are valuable, a patient’s experience does not amount to data-driven outcomes that measure how well these practices are doing. The severity of your disease, whether your treatment is effective or not, and your quality of life do. Imagine if, as a patient, you can search for practices and doctors who have a high success rate in regards to clearing eczema? Wouldn’t that be awesome and make our lives easier?
The future of eczema
In October 2018, I was fortunate to attend an exclusive meeting that would forward the eczema community in creating this data-driven platform. The purpose of the meeting was to home in on one measurement that patients would answer after every doctor’s visit. This measurement would look at the severity of one’s skin disease, as well as the quality of life of the patient. The overall goal of this instrument is to bridge the gap between disease, treatment and the continuum of quality improvement.
Patient reported outcome
The measurement to be determined is called a patient-reported outcome measure (PROM) – a tool that is developed through the support of physicians, researchers, and patients to assess and quantify an outcome. PROM would not only enhance research and treatment for eczema, but it would also provide information on the practice of the provider and how well they are doing in managing their patient’s treatment and care.
How it all began
On February 3, 2018, the initial step towards a quality measure in the field of dermatology was taken.The International Dermatology Outcome Measures (IDEOM) and the American Academy of Dermatology (AAD) collaborated with healthcare providers in NYC to discuss a provider outcome measurement. They had agreed that the current quality measure for inflammatory skin diseases had limited validity and feasibility. Different than a patient-reported outcome measure, this metric would only look at the severity of the patient’s skin condition; it would not measure the patient’s perspective.
Eczema was chosen
Additionally, the collaborators of the meeting voted on commonly encountered inflammatory skin disorders in dermatology practices. Through rigorous measures, participants chose three skin conditions out of 23 that could be measured with the utilization of a global disease severity metric. Atopic dermatitis, amongst, psoriasis, and acne gained overwhelming consensus.
Patient perspective is important
The patient perspective and how they are doing alongside the treatment is just as important. Although having a provider outcome measure is valuable, it would not have the ability to demonstrate whether the high-quality care delivered to patients is effective or not. It also does not consider a patient’s quality of life in regards to their skin condition.
On May 15th, IDEOM held another meeting in Washington, DC where a consensus was met on wanting both provider and patient outcome measures.
In a room full of hand-selected doctors, providers and patients, we took some time to look at the overview measurements and instruments that already existed in dermatology. There were five in particular that we analyzed: PtGA measures, SkinDex16, SkinDex Mini (SDM), Dermatology Life Quality Index (DLQI) and Itch Visual Analogue Scale (VAS). We were able to measure multiple factors of each measurement (i.e., the clarity of each question, the time frame presented, and more). In a questionnaire format, each participant received a chance to review each of the instruments.
Then, as a collective we began voting on which measurement out of the five analyzed we found would best serve the entire patient spectrum (eczema, psoriasis, and acne). The organizers broke this up through a variety of questions. We used an anonymous voting system through an individual, wireless clicking device.
Eczema is more than just a physical condition. This was made clear when we decided on going with a patient outcome measurement that was closest to the Skindex Mini. The Skindex Mini is a tool that measures the effects of a skin disease in three different ways:
- Symptoms (itching, burning, pain, bleeding etc.)
- Emotions (worried, embarrassed, ashamed, frustrated, depressed, etc.)
- Functioning (effects, relationships, hard to work, sleeplessness, etc.)
Thankful and excited for the future
It’s time we take a deeper look into managing and supporting eczema as a whole and it starts with PROM’s. Although there are many hurdles to jump over in finalizing which measurement will be selected, we are one step closer to creating measurable, data-driven results for our community. As IDEOM President, Alice Gottleib would say, “Don’t get mad. Get data.”
I want to thank the National Eczema Association for the profound opportunity to be in a room full of world-changers. It was an honor to be chosen as an eczema patient advocate who is making decisions on research and the future relationships of patients and providers. Stay tuned!
Changing our conversations at doctor’s offices
As a person who has been living with eczema for over 25 years, I am excited for all of the research, treatments, and conversations that are happening around this skin disorder and overall skin positivity. This new movement and focus on eczema is leading our community into creating a deeper relationship with our doctors and health care providers.