Abstract

Background: Symptoms associated with midline lymphedema are not fully understood and it is unclear if symptoms associated with swelling in the head and neck are similar to those associated with swelling in the truncal region of the body. Objectives: Describe symptoms experienced by those with head and neck and truncal lymphedema. Compare symptom presence, intensity, and distress among those two groups and participants with no lymphedema. Methods: Cross-sectional descriptive study administered by online survey. Results: Nonlymphedema participants were younger than the lymphedema groups. Those with truncal lymphedema took more diuretic medications than the other groups. Participants with truncal lymphedema experienced a greater number of symptoms than the other groups (p < 0.001). These symptoms were also more severe and intense (p < 0.001). Fourteen symptoms distinguished the truncal group from the other two groups (p < 0.001). Nine symptoms differentiated the head and neck group from the other groups (p < 0.001). Conclusion: These preliminary findings support that symptom profiles differ among those with lymphedema and those without lymphedema. The number, type, severity, and intensity of symptoms vary based upon the location of lymphedema. The need to use two lymphedema anatomical classifications (head and neck and truncal) instead of one classification (midline) when assessing lymphedema-related symptoms is also supported.

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