Lymphedema - the long way to diagnosis and therapy

Background: Clinical experience indicates that edema often remain undiagnosed. The 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. The following latency times were computed: the time between (1) first symptoms and first 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 after first 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 significantly longer: The average time between first symptoms and physician consultation was 5.2 +/- 11.0 years, and edema diagnosis was made after further 6.7 +/- 11.4 years. On average, it took 13.5 years from first 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.