Standard of Care for Lipedema in the United States (SOC Lipedema US) Dr. Karen Herbst has worked with patients with lipedema for over 15 years and is seeking support from the NHLBI for a meeting gathering experts and patients to develop a consensus paper on the diagnosis and care of people with lipedema. Lipedema is a common and painful fat disorder occurring primarily in women (ICD-10 E88.2). There are no formal guidelines for the care of women with lipedema in the US despite being first described in 1940 at the Mayo clinic. Guidelines on lipedema from Spain, the Netherlands, the United Kingdom and Germany have been published. Healthcare is not the same in the US compared to these countries, with different racial and ethnic diversity, high obesity rates, a large land mass, and a different healthcare system. The SOC Lipedema US meeting will occur April 11-12, 2019 at the Renaissance Baltimore Harborplace Hotel. This meeting occurs just before the Fat Disorders Resource Society (FDRS) meeting in the same hotel, April 12-14, 2019. The FDRS supports and educates patients and healthcare providers. Fifteen attendees with expertise in lipedema, vascular and plastic surgery, physical medicine & rehabilitation, medicine, obesity, phlebology, endocrinology, and physical and occupational therapy will gather with patient representatives under the guidance of a parliamentarian using the Appraisal of Guidelines for Research and Evaluation (AGREE) II as a framework to develop the SOC. Prior to meeting, attendees will receive all published lipedema guidelines, seminal papers on lipedema, and collated opinions from healthcare providers across the US collected using an Institutional Review Board approved questionnaire on SOC for lipedema. These data will be summarized in the beginning of the meeting by select attendees. Attendees form groups to discuss guidelines for the diagnosis of lipedema, clinical measures to ensure early detection of lipedema and follow up, and treatment and support of lipedema; afterwards they will gather to share data. The following morning collated data from the meeting will be discussed along with assignments for a consensus paper to be published in a peer- reviewed journal within the following year. The consensus paper generated from the meeting will provide evidence-based education for healthcare providers on lipedema and provide tools for care of patients in the US. The consensus meeting will also highlight areas in which more research is needed on the basic and clinical levels, especially in the area of vascular disease. The meeting will be summarized at the FDRS conference in the days following the meeting.
Lipedema is a common disorder in women first described in the United States in 1940 that is often misdiagnosed as lifestyle-induced obesity; however, it is a distinct disorder with different treatments. Standard of care guidelines for lipedema have been published in the United Kingdom, the Netherlands, Spain and Germany; no such document exists in the United States. Since the United States has a significantly different healthcare system from countries with guidelines, as well as a large land mass and a diverse population, the goal of this application is to convene a conference of experts in April 2019 to review extant guidelines, literature and results from a standard of care questionnaire, and to generate a published peer-reviewed standard of care guideline for lipedema in the United States to improve the quality of life of women with lipedema.