b'As a result, accurately evaluating the incidence An estimated 20 to 60% of women undergoingand prevalence of lymphedema is complicated.surgical treatment for gynecologic cancer will Some of the sources of the complexity include: experience lower limb chronic lymphedema 17 . 1. There is an under-reporting of lymphedemaWHAT IS CURRENTLY LACKING INTHE LITERATUREUnfortunately, lymphedema is a disease that is not well recognized either by the community at large Standardized reporting. Unfortunately, providersor the healthcare providers, and, therefore, oftendo not routinely encode lymphedema properly asunderdiagnosed or misdiagnosed and, even whena diagnosis within the electronic health record.diagnosed, not reliably enumerated, and encoded.These omissions likely stem from a lack of clinical 2.Lymphedema etiology is heterogeneousrecognition, failure to acknowledge the medical The heterogeneous nature of the etiology may notimportance of the diagnosis, and the under-always capture the diagnosis consistently inrecognition of the importance of disease as an electronic health medical records. enumerated component of the medical record.3. There is a lack of standardizationThere are Comprehensive surveillance. There are a number variations in how healthcare providers diagnose andof surveillance systems available across diseasedocument lymphedema. This is further complicated areas, such as diabetes, HIV, and cancer, which help by inaccurate or incomplete ICD-10 coding ofto identify patterns and track regional/national trends lymphedema, leading to an underreporting of what in those disease areas; this is entirely lacking for is encountered in clinical practice, contributing tolymphatic disease (LD).variations in the prevalence reporting.Proper diagnosis and coding of electronic health4. There are regional differences in incidence/ records. Underdiagnosis, underreporting, andprevalenceLymphedemas prevalence variesimproper coding in electronic health records are significantly by region and population. For example,more likely when lymphedema is mild or secondary the prevalence of lymphedema can be influenced byto other disease processes like obesity, chronic genetics, access to healthcare, and how prevalentvenous disease, or cancer treatment (results in certain cancers (like breast, head and neck, andunderestimating the true prevalence). other relevant cancers) might be in different subsetsLack of robust longitudinal data. There are no of the population and/or geographic locations.national or statewide data sets available. Although 5. There is a dearth of population studiesWe lackthe LE&RN Global Registry for Lymphatic Diseases well-designed and rigorously performed relevantis intended to circumvent this absence with time, a epidemiologic studies 12 .more robust set of longitudinal data is needed to assess the state of the disease better.As such, most of the data obtained for this report isLack of population-based studies. Very few inferential and collected through recent peer-reviewed publications and methods by the Lymphatic Educationpopulation-based research studies exist to & Research Network (LE&RN), as described above.characterize how different factors impact people living with lymphedema.WHAT WE KNOW FROM THE LITERATURE Racial and socioeconomic disparities. The LE&RNPrimary lymphedema is defined as a rare diseaseGlobal Registry for Lymphatic Diseases, in its infancy, because it affects 1 in 100,000 people, while secondarydoes not have the penetration to document the lymphedema is the most common cause ofextent of racial and socioeconomic disparities lymphedema, affecting 1 in 1,000 Americans 1,12 .present within its lymphedema population.The anonymous, social media-based study reported Most published data evaluating the incidence andhere, by its nature, does not have the capacity to prevalence of secondary lymphedema comes from investigate these variables. In the future, these the field of oncology: knowledge gaps will require intensive, funded An alarming 1 in 5 women who have beeninvestigation.diagnosed, treated, and survived breast cancer Comprehensive data on pediatric primarywill face chronic lymphedema for the rest of lymphedema.their lives 15 . For those diagnosed and treated with head andneck cancer, over 90% will suffer from some formof lymphedema, with 50% of those complicatedby fibrosis 16 . |National Indicator Report on Cancer-Related Lymphedema (LE)|7'