Full bibliography

Background Lipoedema is a condition of abnormal accumulation of painful adipose tissue, usually in the lower body of women. The disproportionate subcutaneous adipose tissue may negatively impact health-related quality of life (HRQoL). There are currently no patient reported outcome measures (PROM) specifically designed to assess the HRQoL in individuals with lipoedema. The aim of this study was to compare scores on validated lower limb lymphoedema PROMs between females with lipoedema and lymphoedema. Methods In a private lymphoedema clinic in Australia between 1 October 2021 and 22 August 2023, individuals assigned female at birth, aged 18 years and older who consented to the entry of de-identified data into a research databank and completed the Lymphoedema Quality of Life tool (LYMQOL-leg) and/or Lymphoedema Symptoms Intensity and Distress Survey (LSIDS-L) for the legs were included in this study. Between group analysis was conducted on 151 participants who were either diagnosed with lipoedema (N = 90) or bilateral leg lymphoedema (N = 61). Participants with both conditions were excluded. Results Participants with lipoedema reported significantly higher burden scores for symptoms (p = 0.003), appearance (p = 0.003) and mood (p = 0.011) in the LYMQOL-leg survey when compared to participants with bilateral leg lymphoedema. Participants with lipoedema also reported significantly worse LSIDS-L scores for neurological sensation (p = 0.003), biobehavioral (p = 0.016) and resource (p = 0.008) questions compared to participants with lymphoedema. Conclusions This study highlights that although females with lipoedema and lymphoedema experience similar symptoms, their experiences differ in specific outcomes that influence their HRQoL. These findings warrant further investigation into the HRQoL concerns of individuals with lipoedema.