Original Title: Le lipœdème

Authors' objectives: In Québec, lipedema is largely unknown to healthcare professionals. As a result, those affected have difficulty obtaining a follow-up and treatments for their condition. Although the World Health Organization (WHO) included lipedema in their latest revision of the International Classification of Diseases (ICD-11), there is still no corresponding diagnostic code in the Régie de l’assurance maladie du Québec (RAMQ)’s system. This absence hinders the estimation of its prevalence in the province. For all these reasons, persons with lipedema are asking the government to recognize and adequately manage this condition within the healthcare system. Therefore, the Ministère de la Santé et des Services sociaux (MSSS) asked the Institut national d’excellence en santé et en services sociaux (INESSS) to shed light on this condition and on the best practices for diagnosing and managing it.

Authors' results and conclusions: RESULTS (#1 LIPEDEMA: A POORLY UNDERSTOOD CONDITION THAT PRIMARILY AFFECTS WOMEN): The first symptoms of lipedema generally appear during a period of hormonal fluctuation, most often during puberty, but also after a pregnancy and during menopause. A family history of lipedema is frequently reported by women with this condition, suggesting the existence of a genetic component, which has yet to be identified. (#2 LIPEDEMA AND ITS ASSOCIATED SYMPTOMS HAVE A SIGNIFICANT IMPACT ON FUNCTIONAL CAPACITY, QUALITY OF LIFE, AND MENTAL AND PSYCHOSOCIAL HEALTH): Individuals with lipedema report difficulty performing activities of daily living and frequently present with reduced mobility. • Those affected may have depressive disorders, anxiety disorders and eating disorders. (#3 CURRENTLY, THERE IS NO UNIVERSALLY RECOGNIZED DIAGNOSTIC TEST OR CRITERION FOR LIPEDEMA. THE DIAGNOSIS IS BASED MAINLY ON THE CLINICAL EXAMINATION AND MEDICAL HISTORY): According to the recommendations identified, the diagnosis of lipedema requires a comprehensive and holistic health assessment that should include a medical history, a clinical examination to check for signs and symptoms, and a psychosocial examination aimed at assessing the impact of the condition on the person’s quality of life. (#4 THERE IS NO CURATIVE TREATMENT FOR LIPEDEMA. HOWEVER, A CONSERVATIVE THERAPEUTIC APPROACH MIGHT HELP TO MANAGE SYMPTOMS, IMPROVE QUALITY OF LIFE AND PREVENT PROGRESSION OF THE CONDITION): According to the guidelines and evidence, compression garments are a frequently used treatment modality that may help reduce certain symptoms. Furthermore, although lymphatic drainage is used to relieve certain symptoms of lipedema, its efficacy is not supported by scientific evidence, despite positive testimonials from some women. (#5 THERE IS NO CLEAR CONSENSUS ON THE APPROPRIATENESS OF LIPOSUCTION AS A TREATMENT FOR LIPEDEMA): Three main types of liposuction are used in the treatment of lipedema: tumescent liposuction, water-assisted liposuction and power-assisted liposuction. The National Institute for Health and Care Excellence (NICE) and the Canadian Agency for Drugs and Technologies in Health (CADTH, now Canada’s Drug Agency) do not, at this time, recommend liposuction as a treatment option for lipedema. (#6 LIPOSUCTION MAY BE EFFECTIVE IN TREATING LIPEDEMA; HOWEVER DATA ARE BASED ON POOR-QUALITY STUDIES): According to the studies identified, liposuction may be effective in relieving the symptoms associated with lipedema, such as spontaneous pain, edema, sensory symptoms, bruising and mobility problems, in addition to improving quality of life and physical and mental health. It may also be effective in reducing lower-limb volume and the need for conservative treatments. However, the efficacy results are based on before-and-after, non-randomized and uncontrolled studies, as well as self-reported data from patients using questionnaires. (#7 LIPOSUCTION IS A SAFE AND GENERALLY WELL-TOLERATED PROCEDURE FOR PEOPLE WITH LIPEDEMA): According to studies, adverse events related to the procedure are infrequent and mild. Certain more serious events have been reported in rarer cases. Complication rates ranging from 0 to 5.7% per procedure have been reported in studies. CONCLUSION: Lipedema is a medical condition with a significant impact on the quality of life of those affected, mostly women. Although the subject is constantly evolving and the efficacy of certain treatments remains uncertain due to the paucity or poor quality of the available data, the literature and the persons consulted highlighted unmet needs and important issues, including the need for better recognition by healthcare professionals and appropriate management.

Authors' methods: A systematic search of the scientific literature (primary studies and systematic reviews) and publications containing clinical recommendations (clinical practice guidelines and expert consensus), covering the period from 2017 to December 2024, was carried out. The literature search was performed in collaboration with a scientific information advisor in the MEDLINE, Embase, EBM Reviews, PsycInfo and CINAHL Complete databases, together with a manual search. An exploratory search (grey literature and informant consultations) concerning reimbursement of recognized treatments and their approximate cost was also conducted. Documents were selected using preestablished criteria, and their quality was assessed using the AGREE-II, AGREE-GRS, ROBIS or NHLBI tool, depending on the type of publication.

Project Status: Completed

Year Published: 2025

URL for published report: https://www.inesss.qc.ca/publications/repertoire-des-publications/publication/le-lipoedeme.html

English language abstract: An English language summary is available

Publication Type: Other

Country: Canada

Province: Quebec

Organisation Name: Institut national d'excellence en sante et en services sociaux

Contact Address: L'Institut national d'excellence en sante et en services sociaux (INESSS) , 2021, avenue Union, bureau 10.083, Montreal, Quebec, Canada, H3A 2S9;Tel: 1+514-873-2563, Fax: 1+514-873-1369

Contact Name: demande@inesss.qc.ca

Contact Email: demande@inesss.qc.ca

Copyright: L'Institut national d'excellence en sante et en services sociaux (INESSS)