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Lipoedema is a loose connective tissue disease primarily affecting women characterized by an abnormal build-up of painful fat in the legs and arms. In healthcare, lipoedema is often confused with obesity, and today, diagnostic tools and standardized guidelines for adequate treatments are lacking. Still, research on how affected women manage their health problems and whether they are satisfied with their care remains sparse. Therefore, this study aimed to contribute knowledge on healthcare experiences, and their use and self-reported effects of self-care and treatments among women with lipoedema.
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This study underscores the need for tailored self-management interventions for people with lipoedema. The adaptation of existing self-management strategies from other chronic conditions should take into account the specific needs, barriers, and facilitators of people with lipoedema and their HCPs.
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Background: Despite its estimated high prevalence among women and increasing awareness, lipedema remains under-investigated. Ignoring its debilitating nature, surgical treatment for this condition is frequently covered by health insurance only in advanced stages and after the exhaustion of conservative therapies. Methods: A total of 1015 patients with lipedema were recruited via social media platforms. Of these, 860 patients provided answers to at least one complete section of the modified Body-Q questionnaire (response rate 85%). The Mann–Whitney U and Kruskal–Wallis tests were utilized to assess the impact of the surgical treatment by means of patient-reported outcomes on the self-perception of various body areas. Results: The satisfaction scores among conservatively treated patients for abdominal appearance, arms, back, body, buttocks, and inner thighs showed a statistically significant decline with increasing stages of lipedema. The comparison of patient evaluation scores in the appearance domain demonstrated better patient self-perception scores in patients who received at least one session of the surgical treatment for the hips and thighs (p < 0.01), inner thighs (p < 0.01), and excess skin (0.01) scales. On the body scale, the patients who underwent liposuction again reported better satisfaction scores; however, this did not reach statistical significance (p < 0.081). In the health-related quality of life domain, the patients who received liposuction treatment reported a better outcome in the body image (p < 0.01), physical function (p = 0.05), physical symptoms (p = 0.04), and psychological function (p < 0.01) scales. Conclusions: The current study underscores the burden of lipedema of affected patients and its negative impact on self-perception. As the disease progresses, conservatively treated patients experience a decline in satisfaction with various aspects of their appearance. However, surgical interventions, particularly liposuction, does not address esthetic concerns but significantly improve health-related quality of life across multiple domains, emphasizing the comprehensive benefits of surgical intervention in the management of lipedema.
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