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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.
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INTRODUCTION: The lower limbs are a common body site affected by chronic edema. Imaging examination of the lymphatic system is useful to diagnose lymphoedema, identify structural changes in individuals, and guide interventional strategies. In this study, we used a protocol combining indocyanine green (ICG) lymphography and ICG-guided manual lymphatic drainage (MLD) for the diagnostic assessment of lower limb lymphoedema. MATERIALS AND METHODS: Patients with lower limb lymphoedema were divided into three groups by their medical history: primary, secondary cancer-related, or secondary non-cancer-related. ICG lymphography was conducted in three phases: initial observation, MLD to accelerate ICG dye transit and reduce imaging time, and imaging data collection. Lymphatic drainage regions were recorded, and the MD Anderson Cancer Center ICG staging was applied. We collected routine lymphoedema assessment data, including limb volume and bioimpedance spectroscopy measurements. RESULTS: Three hundred and twenty-six lower limbs that underwent ICG lymphography were analyzed. Eight drainage regions were identified. The ipsilateral inguinal and popliteal were recognized as the original regions, and the remaining six regions were considered compensatory regions that occur only in lymphoedema. More than half of the secondary cancer-related lower limb lymphoedema (57.6%) continued to drain to the ipsilateral inguinal region. The incidence of drainage to the ipsilateral inguinal region was even higher for the primary (82.8%) and secondary non-cancer-related (87.1%) groups. Significant associations were observed between cancer-related lymphoedema and the presence of compensatory drainage regions. CONCLUSIONS: We proposed a prospective ICG lymphography protocol for the diagnostic assessment of lower limb lymphoedema in combination with MLD. Eight drainage regions were identified, including two original and six compensatory regions.
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- Lipedema (1)
- Open Access (2)
- Original studies and data (2)
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- Journal Article (2)
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