PSS56 - Lymphedema – the Long Way to Diagnosis and Therapy

Abstract

Summary Background: Clinical experience indicates that edema oft en remain undiagnosed. Th e aim of this study was to examine how much time passes between important events in the ‘patient journey’ and what predicts delayed consultation and diagnosis. Patients and methods: 65 patients with secondary arm lymphedema and 161 patients with primary or secondary leg lymphedema were interviewed. Th e following latency times were computed: the time between (1) fi rst symptoms and fi rst visit to physician; (2) visit of physician and diagnosis; (3) diagnosis and lymph drainage therapy; (4) diagnosis and compression therapy. Associations of latency times with patient and clinical characteristics were analysed using t tests and multivariate linear regression. Results: All arm edema patients had consulted a physician in the year aft er fi rst symptoms at the latest, and everyone except two received the diagnosis in the following year at the latest. For secondary leg edema, the average latency until physician consultation was also short with 0.5 ± 1.8 years, and latency until diagnosis was 1.7 ± 3.8 years. In contrast, latencies in primary leg edema were signifi cantly longer: Th e average time between fi rst symptoms and physician consultation was 5.2 ± 11.0 years, and edema diagnosis was made aft er further 6.7 ± 11.4 years. On average, it took 13.5 years from fi rst symptoms to lymph drainage therapy in these patients and 13.7 years until compression therapy. Predictors of late consultation and late diagnosis in primary leg edema were age < 40, positive family anamnesis, and female gender. Conclusions: Primary leg lymphedema is diagnosed late in many cases, especially in younger women.