b'Participant data was completely anonymous, and Participants mean age was 55.65 years, and mostno protected health information (PHI) or personal(86.9%) were femaleinformation was collected as part of this report. Most respondents (51.6%) had a history of cancer Participants experienced substantial delays in ABSTRACTdiagnosis and treatmentImportance: Lymphedema is an incurable, progressivePrimary and secondary lymphedema patients lymphatic disease that potentiates physical and psychosocial distress. Despite its global impact,reported similar levels of perceived physician patients reportedly encounter lymphatic ignorancedisinterest in their lymphedema; however, primary throughout the healthcare system.lymphedema patients reported more dissatisfaction with diagnosis and treatment (2.78 vs. 3.12; P0.01)Objective: This study summarizes the clinical characteristics and interactions of lymphedemaKEY INDICATORSpatients within the healthcare system. A secondary nested cohort study was conducted to assess theThis section is an in-depth review of the state of generalizability of initial cohort findings. lymphedema (LE) knowledge and care as capturedDesign: Cross-sectional and nested-cohort designsby the five key indicators below:were implemented.1. EpidemiologySetting: The LE&RN Global Registry for Lymphatic2. Access to CareDiseases was used to obtain demographic and clinical3. Health Disparitiescharacteristics from lymphedema patients affiliated4. Transition in Carewith LE&RN. An online questionnaire was then anonymously distributed to lymphedema patients5. Perceptions Amongst Stakeholdersthrough LE&RNs social media, and questionnaireINDICATOR 1: EPIDEMIOLOGYresults were presented to patients via a digital seminar.Participants: Three cohorts were involved in the study,INCIDENCE RATES & CURRENT STATEall of which included self-identified and practitioner- OF KNOWLEDGEdiagnosed lymphedema patients: The Global RegistryDespite the significant physical, mental, and financial Analysis Cohort included patients who contributedtoll (health burden) that lymphedema imposes on data to the LE&RN Global Registry for Lymphaticindividuals, families, and caregivers, we do not have Diseases, the Interactions Cohort included patientsaccurate estimates of the prevalence or annual affiliated with LE&RN who participated in an onlineincidence of lymphedema in the U.S. In fact, unlike questionnaire about interactions with the medicalmost other chronic health conditions that affect system, and the Seminar Cohort included patients Americans, there are no formal epidemiologic studies who participated in an online data presentation.to validate lymphedema statistics. Measurements: Demographic and clinical charac- The prevalence of lymphedema is estimated to be teristics were extracted from the LE&RN Global between 3 to 10 million affected individuals in the U.S. Registry for Lymphatic Diseases. A 23-item question- These figures are extrapolated from more formally naire on clinical characteristics, healthcare experiences,derived estimates through the National Healthand patient satisfaction with lymphatic healthcare wasServices in the United Kingdom 2-11 , and further by digitally distributed to LE&RN-affiliated lymphedemaenumerating the expected prevalence within individual patients. Seven of the 23 questionnaire items wererisk categories (chiefly related to cancer diagnoses) incorporated into a data presentation. Attendees withand factored by the population density of these lymphedema were asked to answer these questionsindividual causal cancers 1214 .before and after attending a presentation on the original questionnaire results and whether these dataRecently, obesity and chronic venous disease have were reflective of their experiences.eclipsed cancer as the leading causes of secondary lymphedema. Yet, the impact of these diseases onResults the prevalence of lymphedema is still largelySubjective Experiences of the Lymphedema unknown; thus, the prevalence of lymphedema is Patient Population:most certainly under-enumerated. This observationResponses were obtained from n= 2,548 U.S.is aggravated by the lack of consistent disease ascertainment and the undercoding of relevant participants across the LE&RN Global Registry lymphedema diagnostic codes in the electronicfor Lymphatic Diseases and the Interactions health medical record.Cohort combined|National Indicator Report on Cancer-Related Lymphedema (LE)|6'