by Guy S Eakin, PhD
As we take stock of the progress achieved in 2020, we need to ask what we are learning from the patients themselves. Lipedema once felt rare, but now, it’s feeling more like a movement. At the tender age of 1, the Registry celebrated New Year’s Day of 2020 with its 1,000th enrollee! These women and controls represent a broad cross section of lives that span the breadth of the United States, and the Registry is now even finding interest overseas. Registry data analysis is just beginning, but our hats are off to the people who have stood up to measure their experiences in a coordinated way.
At the Lipedema Foundation, we are celebrating the proliferation of opportunities for patients to share their stories. We are excited by the momentum of the Lipedema Foundation Registry, as well as the growth of patient-led internet groups and organizations.
Patients participate in research at the FDRS Conference in 2018. The research room turned into a toga party!
What we need now is a more consistent data collection process. This will allow us to know if something reported by one patient can be compared to a similar story of another. It’s not a trivial issue, and one of our worries in Lipedema research is that we don’t always know if the way we ask a question will get a similar response from similar patients.
Take the topic of pain, for example. Asking, “How are you doing?” gives us a poor ability to compare responses. It’s too broad. Patients might not even know we are asking about pain. They might tell us about pain from last month, when we really want to know how much pain they are experiencing right now.
This brings us to a question we see frequently in Lipedema, which asks patients to measure their last week of pain on a scale of 1-10. It’s only one question, so it’s easy to ask; it’s also sensitive and gives all patients, even those with little pain, the opportunity to provide a score.
But pain is both relative and very personal. Having birthed children, for example, changes one’s pain scale. When we are asked to describe pain, most of us use words that describe not only intensity, but also duration, frequency, characteristics such as burning or throbbing, how much it interferes with our lives, and/or how it changes over time.
For Lipedema patients, pain has special qualities. A 2008 paper [1] describes at least 22 adjectives used by German Lipedema patients to describe pain, which translate to words like “pressing” or ”tearing” in English. A list of patient quotes includes descriptions like, “My skin is too tight,” or “like lead in my feet.” A woman with Lipedema also may not experience pain in her daily life, but a physician’s exam could illicit intense pain, especially when a specific area is firmly pressed on (like the fat pocket below the inner knee...ouch).
Some of the nuances in patient experiences might be very subtle. Keeping with our pain narrative, if that same 1-10 scale is used for an injury, for example, a one-point difference may be considered significant to a clinician or researcher, while a different injury may require a two-point difference to be considered statistically meaningful. We don’t yet know that statistically significant value for Lipedema.
Dr. Rachelle Crescenzi of the Vanderbilt University Institute of Imaging Science works with a Lipedema patient at the 2018 FDRS Conference.
While we’ve used only pain as an example, a comprehensive conversation about health has many different dimensions. We can’t talk about a condition without discussing other issues like fatigue, mental health, or how well our bodies function. Each of these conversations is nuanced, and all of these dimensions need to be tested specifically - and consistently - in patients with Lipedema.
Enter Dr. Felix Angst [2], who worked with a team of Swiss researchers this year to publish a critical evaluation of five different strategies for evaluating several aspects of Lipedema. The paper also examines how each of these different strategies performed when 96 Lipedema patients were compared to 107 patients with a lymphedema diagnosis.
In a well-described and staged Lipedema population, they were able to look at several outcomes including aspects of pain, quality of life, mental health, physical symptoms, and performance. The study team layered a sophisticated statistical analysis onto the patient-reported data. This allowed them to observe that lymphedema patients typically report more favorable outcomes on these measurements than Lipedema patients.
This paper provides researchers with a core set of measures and data-driven strategies that then help other study planners decide how to ask patients about issues like mental health and quality of life in a way that can be compared both between patients and between studies. Dr. Angst’s team takes this question optimization one step further by defining a core set of measures for any study in Lipedema. While it is important, as we’ve said, to ask specific questions consistently in order to prompt consistent data, it is also important to ask the same group the same questions in different studies.
It will be nice to see this study replicated over time in different populations and languages; we will also want to know if these measurements change over time, such as in patients receiving a new therapy. But for now, this paper is a wonderful resource for a small field. By helping researchers understand how patients respond to surveys, Dr. Angst has given patients a stronger voice in the research performed on them.
So for now, what can you do? First, we encourage any patient with interest in research to talk to local research teams or visit www.lipedema.org. Study organizers are increasingly seeking patient partners in research design, execution, and analysis in order to better tailor the research to the needs of all patients. Second, we encourage everyone to help their communities learn about Lipedema. You can share our patient brochures, or even the blog you’re reading now, with friends, family, and health care providers. Lipedema is a condition professionals may not see often in their medical education, and sharing resources is a wonderful way to help raise awareness of Lipedema and the emerging research on it.
Fairly representing and speaking for other patients is never an easy task. Our hope as we move into 2021 is that resources like the Lipedema Foundation Registry, as well as publications like the Angst paper, will help researchers and patients find increasingly productive ways to form partnerships and collaborate, and thus continue to raise the volume of the patient voice.