b'mutations such as Milroys disease 30,31 . WhileINDICATOR 5. PERCEPTIONSthere are pediatric specialists (primarily pediatricAMONG STAKEHOLDERShematology/oncology doctors specializing in vascular anomalies), young adults transferring from pediatric The Status of Lymphedema Awareness to adult care may be lost to follow-up.and Understanding Among Healthcare The Lymphatic Education & Research NetworkProviders(LE&RN) has been instrumental in establishing aPerceptions among healthcare providers vary paradigm shift in the medical care of individuals livingdepending on their training, experience, exposure, with lymphedema, having established LE&RN Centersand the specific context in which they encounter the of Excellence (COE) with specialty designations,disease. While those specializing in oncology may have specifically, the Comprehensive Pediatric Center an acceptable understanding of lymphedema and its of Excellence.causes, most healthcare professionals have limited and In 2018, LE&RN Centers of Excellence comprehensivevaried knowledge levels; this is especially true for standards were established under the guidance of primary care providers who have limited training in their Global Oversight Committee. To accomplish lymphedema. These perceptions can be, and are, this, LE&RN engaged a committee of expert cliniciansdetrimental to the overall outcomes for people living in the U.S. to create the initial draft of standards. with lymphedema. Patients may remain undiagnosed A Global Oversight Committee refined these standardsand experience delays in care, suffering unnecessary and expanded their global applicability. This Globaland preventable complications. Patients who are Oversight Committee reviews all letters of intent anddiagnosed may face recalcitrant providers because applications submitted by institutions seeking a they perceive lymphedema to be hopeless in theLE&RN Centers of Excellence designation. Designationface of treatment options that are limited to awards are determined solely by the Global Oversightsymptomatic control and without twenty-firstCommittee. To date, a total of 62 LE&RN Centers ofcentury pharmacological interventions. Compounding Excellence have been established worldwide, with this vicious circle of limited access to care is the 39 centers located in the U.S. institutional pushback still encountered within thefield of lymphatic medicine, including resource LE&RN Centers of Excellence provide aconstraints, reimbursement issues, and lack of geographically diverse network of multidisciplinaryspecialized services offered to complex casesclinical care and service centers for individuals andof lymphedema. families affected by lymphatic diseases. In addition The Status of Lymphedema Awarenessto clinical and social services, the Centers provideand Understanding Among Those Living professional and lay education in the geographic areas they serve, conduct clinical research, and work withwith LymphedemaLE&RN locally and internationally in its efforts toIt is clear from the studies conducted andcontinually improve the lives of those affected bypresented here that lymphedema substantiallylymphatic diseases and their families. impacts patients well-being and health outcomes.And yet, to date, lymphedema patients face nearly insurmountable barriers to lymphatic healthcare. People living with lymphedema feel alone, isolated, and marginalized. For example, question 21 ofthe 23 questions in the LE&RN survey tool asked:In your experience, how concerned have yourdoctors been about your lymphedema?Patients with both cancer-related lymphedemaand non-cancer-related lymphedema reportedthat the perceived interest level of their physician Map of 62 LE&RN Centers of Excellence regarding lymphedema management was only3 out of 10 (see Figure 3 on following page).Find a LE&RN Center of Excellence: https:// In other words, the patients perceived theirlymphaticnetwork.org/centers-of-excellence doctors were relatively unconcerned with their lymphedema. |National Indicator Report on Cancer-Related Lymphedema (LE)|13'