What is the clinical pathway of women with lipedema ? A mixt study among French patients
Manon CHEVENNEMENT and Jean-Pierre LEBEAU
Although lipedema might affect 11% of women in the world, it remains underdiagnosed, often confused with lymphedema or obesity. Although several countries have established national guidelines for the diagnosis and management of lipedema, there are none in France.The objective was to describe the clinical pathway of these women in France.We broadcasted a questionnaire among patients on symptoms and treatment, a descriptive analysis was carried out for each of them, followed by a comparative analysis. We then conducted semi-directed interviews following a guide inspired by the MINI (McGill Illness Narrative Interview) with voluntary patients for them to express their feelings and their experience of the disease and their care pathway. The analysis was conducted according to an explanatory paradigm inspire by grounded theory.1552 patients were included for the quantitative study. The mean medical wandering was 19 years. 82% of the patients had already consulted for their symptoms but only 62% had obtained a diagnosis of lipedema, mainly by an angiologist, despite having consulted their GP among a large number of healthcare professionals. Most of the operated patients went outside of France. In the 4 interviews, patients expressed great isolation, reinforced by social and medical stigma because of the lack of knowledge around their pathology and confusion with obesity. The disease, its limitations and the difficult clinical pathway had fueled feelings of depression, injustice and anger.These data sustain other european studies (from Germany, UK, Sweden, Netherlands), showing a medical wandering of 15+ years and the need to consult at least 3 doctors to get a diagnosis. Like in other countries, women with lipedema in France are feeling isolated, angry and not heard nor recognized in their suffering.The management of patients with lipedema in France is far from optimal and make the journey of these women long, complex and expensive, contributing to their physical and psychological suffering.
