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  • 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.

  • PURPOSE: Individuals with lipoedema may experience negative impacts that are not often identified through current quality-of-life measures. The aim of this study was to explore the experiences of individuals living with pre-existing lipoedema and their perceptions of how these experiences influence quality of life. METHODS: Participants with a prior diagnosis of lipoedema participated in a single semi-structured interview or focus group. These interviews/focus groups were transcribed verbatim, allowing for an inductive thematic analysis to be conducted. RESULTS: Sixteen participants were included and four main themes were identified. These included: the ongoing work of living with lipoedema, living with a restrictive and overwhelming condition, caught between self-acceptance and social judgement, and forced to navigate lipoedema alone. Across the four themes, 21 sub-themes emerged to convey the quality-of-life concerns experienced by individuals with lipoedema. CONCLUSIONS: Individuals living with lipoedema experience impacts on their quality-of-life across physical, psychological, and social aspects of life. This study highlights how the ongoing burden of physical symptoms, social perceptions, and healthcare-related challenges contributes to reduced quality-of-life for individuals living with lipoedema. Increased knowledge and awareness amongst healthcare providers is needed to improve care received by individuals living with this condition.

Last update from database: 9/23/26, 7:21 AM (UTC)

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