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International Lymphoedema Framework Chronic Oedema/Lymphoedema Outcome Measures Project: American Lymphedema Framework Project Stakeholders Report

Christine Moffatt, Elizabeth Anderson, Jane Armer, Kandis Smith, Nathan Armer
7 September 2021

Introduction: Research demonstrates the negative impact of lymphoedema on all aspects of life. Ongoing issues in building evidence-based treatment consensus guidelines create therapy challenges. Aim: To explore healthcare professional characteristics in the US, perceptions of lymphoedema outcome priorities and outcome measurements. Method: A survey was launched by the International Lymphoedema Framework (ILF) in 2018. Data were analysed addressing stakeholder characteristics and perspectives from healthcare professionals, patients, educators and industry. Results: Data from 341 USA healthcare professionals were analysed. Most respondents were occupational (42%) and physical (39%) therapists. Sixty-five percent of respondents reported measuring treatment outcomes. Forty-six percent of respondents reported not knowing if international or regional guidelines existed. Top treatment outcomes measures reported were arm circumference (84%) and mobility (65%). Stable limb volume (54%) and improved quality of life (54%) were the top success measures. Conclusions: The American Lymphedema Framework Project recommends increasing awareness of national and international standards for lymphoedema care/outcomes.

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