b'INDICATOR 2. ACCESS TO CARE the emphasis on lymphatic anatomy and function has lagged far behind other organ systems within the There are several key factors that contribute to accessconventional medical school curricula 24 , health sciences to care for patients living with lymphedema, including: research, and clinical practice 25 .Those who suffer the A. Experts in the Field of Lymphatic Medicine areconsequences of this neglect are the patients with LackingPatients experiences suggest that theylymphedema and other lymphatic diseases: having struggle to find healthcare providers appropriatelyreceived less funding and attention, they experience trained to recognize, diagnose, and treat lymphedema.the harsh reality that lymphedema lacks innovative In addition, for those diagnosed appropriately, thetreatment options and has limited access to cutting-diagnosis is generally established late in the course edge therapies. of the disease once irreversible structural damage hasINDICATOR 3. HEALTH DISPARITIESoccurred. This is especially true in locations lacking direct access to academic institutions and/or ruralEvidence suggests that disparities in access, quality, geographic locations (see Indicator 2B).and education likely lead to differences in outcomesB. Geography: Where the Patient Lives of care for patients living with lymphedema. These Unfortunately, patients living in rural and underserveddisparities can arise due to numerous factors, including locations do not have the same access to specialtysocioeconomic status, race, and geography 2628 .care and treatments as those who live near a city Key issues that impact lymphedema care include:with an academic institution. A. Socioeconomic DisparitiesRecent publications C. Lymphedema Care Requires a Multidisciplinarydemonstrate that patients with lower socioeconomic TeamTreating lymphedema requires numerousstatus have more difficulty accessing specialized care clinical providers, including the patients primary for lymphedema. This is due to financial barriers, lack care provider, surgeons, interventional radiologists,of insurance coverage, and non-covered costs oncologists, physical therapists, occupationalassociated with management and treatment. therapists, nutritionists, and lymphedema specialists.B. Geographic DisparitiesBecause there is a lack of There is an enormous challenge and burden forawareness and limited resources, those living in rural patients, caregivers, and healthcare providers toand underserved areas are less likely to be accurately coordinate care for patients living with lymphedema.diagnosed with lymphedema and may, therefore, Many patients can be lost to follow-up.experience further delays in diagnosis and treatment. D. Delayed Appointment Scheduling for CriticalC. Racial and Ethnic DisparitiesResearch confirms TherapyPatients experience long wait times forthat there are specific racial and ethnic groups that therapy because there is a shortage of trainedmay be less likely to be diagnosed with lymphedema lymphedema therapists. Unfortunately, a delay inand even may experience a delay in diagnosis, which treatment contributes to the worsening of thecan result in major morbidity and mortality (i.e. symptoms and disease progression.delayed cancer diagnosis) 27, 29 .E. Limited Insurance Coverage and FinancialD. Lack of EducationLack of education posesBarriersLymphedema is a chronic disease anda problem for patients with lymphedema and requires ongoing monitoring and treatment. Somecaretakers and providers who deliver care to those insurance plans do not routinely and/or adequatelywith lymphedema. cover the needed diagnostics and treatments offeredE. Limited Resources for Research and Device to manage lymphedema (e.g., compression garments, imaging, and some surgical procedures 18 ). A recentInnovationNumerous gaps in research exist, study conducted in 2023 suggests that less than including insight into the pathophysiology of 12% of individuals with insurance have access tolymphedema and the infrastructure for new treatment pneumatic compression and surgical treatments development. (See Gaps in the Field of Lymphatic for lymphedema 19 .Research, sponsored by the Lymphatic Education & Research Network in Appendix 4). F. Stigma of Living with LymphedemaMany patients INDICATOR 4. TRANSITION IN CARE avoid seeking care because of the stigma associated with lymphedema. Furthermore, a delay in diagnosisPrimary lymphedema, most commonly presentinginevitably leads to irreversible disease progression 2023 .in children and adolescents, is rare and chronic. G. Lymphatic Research Lags Far Behind Other1/100,000 people in the U.S. have primary DiseasesThe anatomic and functional complexity oflymphedema comprising over 40 diseases, including the human lymphatic system is difficult to address withPrader-Willi syndrome, Turner syndrome, lymphatic current clinical and investigational tools. As such, tumors and malformations, spina bifida, and genomic |National Indicator Report on Cancer-Related Lymphedema (LE)|12'