Disclosures: Hannah Uhlig-Reche, MD, MPH: No financial relationships or conflicts of interest

Objective: Lymphedema commonly affects individuals with Turner Syndrome (TS) and may be present across the lifespan. Although options exist for lymphedema management, it may remain under-recognized and untreated in this population. The objective of this study is to better understand the prevalence and knowledge of lymphedema in females with TS and their caregivers.

Design: This cross-sectional survey study consisted of 24 questions assessing lymphedema awareness, diagnosis and history, treatments and compliance, and experience of related complications, including impact on activities of daily living. Surveys were collected anonymously. Data were analyzed using descriptive statistics.Setting : TS community event, TS Adult Comprehensive Care Center and associated pediatric clinic.Participants : Females diagnosed with TS and/or their caregivers.

Interventions: Not applicable.

Main Outcome Measures: Primary outcomes are lymphedema prevalence and awareness. Secondary outcomes include lymphedema duration, treatment, and sequelae.

Results: Of 41 completed surveys, 51.2% were completed by the patient (average age 25.8 years, range 13-40 years), 26.8% by the caregiver, 2.5% by both the patient and the caregiver, and 19.5% had unmarked respondent type. Greater than 75% reported hearing of lymphedema and 26.8% had discussed lymphedema with a healthcare provider. Twenty-two percent reported receiving a diagnosis of lymphedema with a median age of 2 years at time of diagnosis. The majority (75%) experienced lymphedema at multiple body sites with the legs/feet being most affected followed by hands/arms and neck/face. Half of those with lymphedema reported resolution with a median duration of 4.25 years. Only 33.3% of those with lymphedema diagnosis reported receiving treatment for the condition, including use of specialized massage/manual lymphatic drainage and compression garments.Conclusions: Identification of knowledge gaps regarding lymphedema in TS can help with the development of targeted educational interventions. Greater awareness and understanding of this treatable condition in TS may contribute to improved health outcomes.

Level of Evidence: Level IV

« Back to AAPM&R Annual Assembly 2021

PM&R Meeting Abstracts - https://pmrjabstracts.org/abstract/lymphedema-awareness-and-knowledge-gaps-in-the-turner-syndrome-community-a-survey-study/