The burden of lymphedema on quality of life

<b></b> <i>Background:</i> Due to a lack of validated methodologies, this study aimed to evaluate the quality of life (QoL) among individuals affected by lymphedema and to compare them with the general population and common diseases. <i>Patients and methods:</i> Patients were recruited from October 2023 till March 2024. The SF-36 and LYMQOL questionnaires were administered. The Robert Koch Institute provided data from the survey for secondary evaluations of the DEGS1 study. Descriptive analysis of the patient's data was conducted, followed by an analysis of risk factors, a comparison with common diseases and a pairs matched analyses with the general population based on the parameters sex, age and Body Mass Index (BMI). A p-value below 0.05 was considered significant. <i>Results:</i> Among the 273 patients, 18 had primary lymphedema and 255 had secondary lymphedema due to cancer history. Staging revealed 28 patients in stage I, 137 in stage II, and 75 in stage III. The majority of patients (83%) were female and mostly the lower extremity was affected. Age, International Society of Lymphology (ISL)-stage, and BMI were significantly correlated with reduced QoL in seven, six, and eleven out of thirteen subscales of the respective scores. The LYMQOL analysis revealed, that patients with upper limb lymphedema (ULL) demonstrated higher QoL compared to those with lower limb lymphedema (LLL). When compared to the general population, individuals with ULL exhibited reduced QoL in five out of eight SF-36 domains (p<0.05). Conversely, LLL patients showed decreased QoL across all eight SF-36 subscales (p<0.01). In comparison to diseases like myocardial infarction or malignant diseases, patients with lymphedema experience a significant, diminished QoL. <i>Conclusions:</i> By 2024, lymphedema patients continue to experience significantly lower QoL compared to the general population or common diseases in Germany. LLL patients exhibit a reduced QoL compared to individuals with ULL.