A Comparison of Symptoms Among Patients with Head and Neck or Truncal Lymphedema and Normal Controls

Jennifer K. Doersam, MS,1 Mary S. Dietrich, PhD, MS,1,2 Melissa A. Adair, RN,1 Bethany Rhoten, PhD, RN,1 Jie Deng, PhD, RN, OCN, FAAN,3 and Sheila H. Ridner, PhD, RN, FAAN1. Lymphatic Research Biology 2019

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A Comparison of Symptoms Among Patients with Head and Neck or Truncal Lymphedema and Normal Controls

Jennifer K. Doersam, MS,1 Mary S. Dietrich, PhD, MS,1,2 Melissa A. Adair, RN,1 Bethany Rhoten, PhD, RN,1 Jie Deng, PhD, RN, OCN, FAAN,3 and Sheila H. Ridner, PhD, RN, FAAN1. Lymphatic Research Biology 2019

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.

Main findings

  • The purpose of the study was to compare symptom presence, intensity, and distress among participants with head and neck lymphedema, truncal lymphedema, and no lymphedema.
  • Instruments included demographic self-report form, Health and Lymphedema Form, Lymphedema Symptom Intensity and Distress Survey of symptoms.
  • 254 participants completed the study.
  • Fourteen symptoms distinguished the truncal group from the other two groups, while nine symptoms differentiated the head and neck group from the other groups. While symptoms experienced largely by those with head and neck lymphedema may be more clinically severe because they can impair nourishment (difficulty opening mouth, chewing, and swallowing, those impacting mainly the truncal lymphedema group affect sleep and sexual health, as well as general function (bending, standing, holding urine, and bowels), and were not just more prevalent but more intense and distressful as well.
  • Participants with truncal lymphedema appeared to have a significant level of symptom burden compared with participants in the other two groups. Not only did they experience a greater number of symptoms overall but their symptoms were also more severe and intense.
  • These preliminary findings support the need to use two lymphedema anatomical classifications (head and neck and truncal) instead of one classification (midline) when assessing swelling-related symptoms.