Lymphedema Specialist Joachim E. Zuther is author of “It’s Not Just a Swelling – Lymphedema” and “Lymphedema Management, a Comprehensive Guide for Practitioners,” as well as the Lymphedema Blog. He unpacks why patients face delays in lymphedema diagnosis and treatment and outlines how the medical community can help improve the patient experience.
Lymphedema is a very common disease, affecting up to 250 million individuals worldwide. Research estimates that 10 million people in the United States are affected by the condition (1). Incidence rates in literature vary greatly, which results from the variety of measurement techniques and definitions used in studies that evaluate the rates of lymphedema. The true numbers of patients affected by any form of lymphedema are unknown. Read more about lymphedema, its symptoms and treatment.
Guidelines recommend that clinicians refer patients with primary and secondary lymphedema for therapy in a timely manner to effectively control lymphedema-related symptoms and complications, such as cellulitis, and to modulate lymphedema progression. However, patients frequently encounter lymphatic ignorance throughout the healthcare system, searching in vain for years, sometimes decades, for a diagnosis.
In spite of more than a century of research into the lymphatic system, why do patients continue to face delays in lymphedema diagnosis and treatment?
One of the reasons is certainly the fact that the average American medical school graduate receives less than 45 minutes of lymphatic education within a four-year medical education (2).
With the myriad of research and findings into the lymphatic system in recent years, as well as the large number of indexed manuscripts on lymphatic biology and pathology in the National Library of Medicine, this situation is paradoxical—especially considering the high incidence rates of lymphedema.
In June 2024, the findings of a cross-sectional study (3) were published, outlining and summarizing the experiences and interactions lymphedema patients had with the medical system and the public. It also highlighted the level of dissatisfaction patients felt with appropriate care.
In this study, cancer-related and non-cancer-related lymphedema patients reported similar levels of perceived disinterest by the physician in their lymphedema; however, non-cancer-related lymphedema patients reported more dissatisfaction with care.
Most cancer-related lymphedema patients reported never being questioned about lymphedema symptoms or being physically examined for early detection of lymphedema during their cancer treatment; however, almost 60 % of participants reported developing symptoms of lymphedema within 12 months of cancer treatment.
While most cancer-related lymphedema patients received their lymphedema diagnosis within three months of symptom onset, the majority of the non-cancer-related lymphedema patients were diagnosed more than a year later. The study also reported that about one third of non-cancer-related lymphedema patients saw five or more physicians prior to receiving the correct diagnosis.
Both cancer-related and non-cancer-related lymphedema patients still experience substantial delays between symptom onset and diagnosis … if any diagnosis was given at all.
The lack of recognition of lymphedema as a medical pathology within the general medical community is the most likely cause for this unsatisfactory situation. Therefore, one of the most important steps to increase patient access to knowledgeable and supportive physicians is to adjust the medical curriculum accordingly to close this information gap. Physicians should be presented with the same exposure to the lymphatic system that they currently receive for other functions of the body.
There is hope.
The National Heart, Lung, and Blood Institute (NHLBI) launched the first National Commission on Lymphatic Diseases (5) in December 2023 with the goal of increasing lymphatic research and to speed up diagnosis and effective treatment for lymphedema.
Another important step in the optimization of lymphedema patient care was the enactment of the Lymphedema Treatment Act (LTA) (4), which was signed into law in December 2022, and improved coverage for the treatment of lymphedema from any cause. While the LTA created coverage for compression supplies for patients under Medicare law, this new Act may set a precedent for Medicaid and private insurers to follow.
- https://lymphaticnetwork.org/living-with-lymphedema/the-incidence-of-lymphedema (accessed 9/24)
- Rockson SG, Granger DN, Skeff KM, Chaite W. Lymphatic biology and disease: Is it being taught Who is listening? Lymphat Res Biol 2004;2:86–95
- Bowman, C., Rockson, S.G. The lymphedema patient experience within the healthcare system: a cross-sectional epidemiologic assessment. Sci Rep 14, 12600 (2024). https://doi.org/10.1038/s41598-024-63145-1
- https://lymphedematreatmentact.org/
- https://www.nhlbi.nih.gov/news/2024/nhlbi-helps-launch-first-nih-national-commission-lymphatic-diseases
If you’re newly diagnoses with lymphedema, Juzo offers resources on Juzousa.com to help you better understand the condition and which products are helpful based on a variety of factors. Also, be sure to follow us on Instagram @JuzoCompression and Facebook to learn how compression helps others with lymphedema.