Lymphedema Treatment in the United States

Introduction, Objectives, and/or Purpose: Lymphedema (LED) is a chronic, progressive disease characterized by swelling and skin changes for which there is no cure. Long-term treatment, therefore, assumes a critical role. Approximately 948,000 US women will be diagnosed with cancer in 2023 and 1/3 of those will be breast cancer (BC). BC survivors have the highest incidence of LED (20%-94%), and notably Black (37.2%) and Hispanic (27.7%) women are at increased risk compared to White women (19.8%).
Untreated or poorly controlled LED is associated with increased healthcare utilization and increased morbidity and mortality. The “gold standard” for treatment of LED patients is complete decongestive therapy [CDT] is comprised of exercise, instruction on skin care, limb wrapping, compression garments, and manual lymphatic drainage (MLD) performed by Certified Lymphedema Therapists (CLTs)). The latter individuals are essential, as they provide the LED care. The purpose of this study is to employ real world data to understand the treatment patterns of LED and most importantly the patient’s access to care, highlighting the socio-economic factors that present limitations to proper treatment.

Methods: To assess the magnitude of the problem the IBM MarketScan Commercial and Medicare Claims Databases (4/13- 3/19) ICD 9/10 codes were reviewed for new diagnoses and etiology of LED (index). HCPCS identified diagnostic methods (±1 year from index) and treatment post-index date (mean days = 765).
A database of CLTs was developed and therapists and estimated lymphedema patient population were plotted on a heat or Flourish map, which illustrates the density of CLTs in an area (ratio of CLTs/patients) to illustrate potential gaps in access to therapy (assuming a 30-mile travel distance).

Results: An analysis of IBM MarketScan data (4/2013-3/2019) included 85,601 patients with a new lymphedema diagnosis; 32.9% were aged 55-64 and 20.4% were 45-54; most were female (72.6%). Common putative causes of LED included cancer treatment (27.1%), VLU/ CVI (9.5%), and morbid obesity (6.5%); 44.4% did not have a notable cause.
Patients waited 146.9 days from diagnosis to first treatment (compression garment or MLD). One half (51.1%) attended >1 session of MLD, 19.8% received compression garments. Notably 28.6% received no treatment. Advanced pneumatic compression devices (PCD) were prescribed for 10.8% and 6.0% received a simple PCD. (Table I).
Therapy varied with etiology; more breast cancer related lymphedema patients received CDT vs. phlebolymphedema [87.5% vs. 64%] and MLD [72.3% vs. 34.5 %] (p < 0.001) emphasizing the role of the CLT.
A US heat map, demonstrating the therapist to patient ratio is shown in Figure I. Areas in green represent geographies with sufficient availability of therapists to treat the estimated local lymphedema patient population (1:1,000 persons) vs. red where demand exceeds availability and 66% of lymphedema patients that do not have ready access to MLD.
To provide granularity on socioeconomic factors and access to therapy, additional analyses were performed. Using 2021 Census data, we found more than 16.6 million households whose median income is below the poverty threshold ($21,600) correspond to regions where MLD therapy is limited, and 43,840,626 persons do not have a MLD therapist within their county boundary. The average household income (AHI) of these counties was $40,926, with 3.8 million (23.2%) households reporting income <$21,600. (Figure 2) Conversely, the AHI in areas with ready access to MLD therapy was $45,381, with 107,612 (16.4%) low-income households and 58,236 (8.9%) high income (>$150,000) households (p < 0.067).
In counties with >100,000 low-income households are more likely to be Black [18.9% vs 10.5%], Asian [8.6% vs. 3.4%], bi-racial [18.3% vs. 10.6%], and, led by a mother only [32.3% vs 21.5%]. In addition, 16/18 are in states with the highest number of same sex couple households.
Women diagnosed with breast cancer and living in poverty are less likely to receive an early diagnosis [57.9% vs. 64.5%], undergo surgery [93.2% vs. 95.0%], receive radiation therapy [36.6% vs. 42.8%], they wait more than 60 days for surgery [12.4% vs 9.1%] and at least 180 days for treatment [14.2% vs. 2.9%], and have a lower 3-year survival rate [13.7% vs. 29.9%] vs. women with private insurance.

Conclusion(s): Patients continue to encounter barriers to accessing therapies critical to managing their LED with nearly 1 in 3 never obtaining access to the care. Patients who do receive care wait, on average, 5 months for access to compression garments or MLD, and the small percentage of patients prescribed a pneumatic compression device (10.8%) do not receive it for 7-24 months post diagnosis.
In the absence of authoritative treatment pathways, lymphedema therapists are often the only provider dedicated exclusively to supporting patients with lymphedema. Access to therapists is critical to ensuring that patients have access to proper care which will continue to be challenging following the COVID-19 pandemic, with 55% of providers reporting burnout and 20-40% intending to reduce hours or leave healthcare. ,.
People living in poverty are less likely to have access to healthy foods, housing, clean water, proper sleep, and other factors that impact their health. They are also more likely to suffer from chronic health conditions like lymphedema and be limited in their ability to seek healthcare due to an inability to forgo work hours and wages, inadequate childcare, and lack of access to transportation. , Thus limiting their access to a lymphedema diagnosis and treatment central to the management of their symptoms.
With limited access to proper care, coordinated efforts must be dedicated towards educating patients on self-care techniques to manage their symptoms. It is well known that patients are not compliant in performing self MLD at home further emphasizing the criticality of providing an at-home solution that is convenient, reliable, and easy to use.