Health‐related quality of life and associated factors in patients with primary lymphedema

Aim: Primary lymphedema requires continuous conservative treatment during the patient's life, which may affect their health‐related quality of life (HRQOL). Physical and psychosocial characteristics related to lymphedema are associated with their HRQOL. This study aimed to assess HRQOL in those patients undergoing conservative treatment and to determine the factors associated with their HRQOL. Methods: This was a cross‐sectional, observational study that included 83 patients with primary lymphedema at an outpatient clinic for lymphedema. HRQOL was assessed with the Medical Outcomes Study 36‐Item Short Form Survey (SF‐36) and EuroQol 5‐Dimension (EQ‐5D). Lymphedema status/complications and psychosocial status were evaluated by medical records, physical assessment, and self‐administrative questionnaires. Results: The general health perception score in the SF‐36 was lower than the age‐ and sex‐stratified national norms (P = 0.001). In the EQ‐5D, the proportions of patients with some/moderate or severe problems were 42.2% for pain/discomfort, 21.7% for usual activities, and 20.5% for anxiety/depression. By multiple regression analyses, a lower physical component summary score in the SF‐36 was associated with a higher lymphedema stage (P = 0.021), cellulitis within 30 days (P = 0.003), exercise (P = 0.010), and more substance use coping (P = 0.012). A lower mental component summary score was associated with skin lesions over edematous limbs (P = 0.008), less humor coping (P = 0.005), and more self‐blame coping (P = 0.014). Conclusion: Patients with primary lymphedema have problems in health perception, discomfort, usual activities, and anxiety/depression. Preventing cellulitis and skin lesions and humor coping may be able to improve HRQOL.