By Stephanie Peterson
Today, a Lipedema diagnosis requires a “clinical diagnosis.” This means that diagnosis is primarily the professional opinion of a skilled physician based on the clinical exam and patient history. To date, there remains no laboratory or imaging finding that can positively confirm the presence of Lipedema.
Over the years, several papers have been written to codify what goes into the diagnosis of Lipedema. Most physicians with experience in Lipedema can trace their clinical approach back to one or more of these resources.
In some cases, these documents are well established scholarly papers, such as one of the original papers by Allen and Hines that are frequently cited by other scholars. Recently, expert groups have often worked together to summarize available research evidence, and propose adaptations of the diagnostic criteria and treatments. These reports may be adopted by professional societies or published independently.
With respect to Lipedema, the Lipedema Foundation recently compared eight of the published criteria for diagnosing Lipedema. This comparison reveals that there is generally more agreement than disagreement across the published diagnostic criteria - with one exception, the JWC International Consensus Document, which is an outlier on several dimensions. The key differences relate to how the authors conceptualize the distribution of affected tissue, or Lipedema’s relationship to comorbid conditions such as obesity, tissue elasticity, or psychological involvement. Which criteria is the best?
Unfortunately, that is for the future to decide. In most cases, the disagreement is fueled by an absence of strong data, and the lack of an objective laboratory or imaging finding. As stronger diagnostic technologies emerge, these disagreements will likely be settled and replaced with more focused concerns. This research gap highlights the need for growth of the research funding environment, particularly the investments of government funding like the US National Institutes of Health.
But what do such disagreements mean outside of professional meetings? Researchers interested in developing new diagnostic tools need to understand the criteria in use. Patients recruited to a study under one diagnostic criteria may represent a slightly different population than those diagnosed under another approach. Thus, reporting of the paradigm used to diagnose study participants should be included in any publication if studies are to be compared.
For patients, if there is any consequence of being diagnosed on one criteria versus another, it is not likely to be fully understood until an objective approach to diagnosis is discovered. In the meantime, patients who may have Lipedema can ask their physician which Lipedema diagnosis criteria they rely on and how that conceptualization informs their approach to care.