Time interval from symptom onset to diagnosis among women with lipoedema in Switzerland

Abstract Background Timely diagnosis of lipoedema remains challenging, with prolonged delays contributing to reduced quality of life. The aim of this study was to analyse the time from first symptom onset to diagnosis, and identify factors associated with diagnostic intervals. Methods This was a cross-sectional analysis using data from the RAVAD (Registry of Rare Vascular Diseases) registry between July 2017 and December 2023. The study was conducted at the Centre for Malformations and Rare Vascular Diseases (CMRVD) at Lausanne University Hospital (CHUV) in Switzerland, a referral centre specializing in lipoedema management. Women aged 18 years and older with a confirmed diagnosis of lipoedema based on established diagnostic criteria were included. Patient data, including demographics, and clinical characteristics, were extracted from electronic patient records. Time-to-diagnosis was defined as the number of years from symptom onset to formal diagnosis. A regression analysis was used to identify factors associated with diagnostic intervals. Results A total of 393 female participants (mean age: 42.4 ± 12.6 years) were included. Symptom onset occurred primarily during adolescence ( n = 246, 62.6%), with over half of the participants ( n = 203, 51.7%) reporting a family history. The mean time-to-diagnosis was 20 years (SD: 13), with 231 patients (58%) experiencing time-to-diagnosis exceeding 15 years Compared to stage 1, participants with stage 2 (95% CI: 0.12–0.45, p = 0.001) and stage 3 (95% CI: 0.24–0.62, p < 0.001) experienced longer diagnostic intervals . Conclusion The prolonged time-to-diagnosis of lipoedema highlights the need for improved awareness, early recognition, and standardized diagnostic pathways to facilitate earlier diagnosis, and improve patient outcomes.