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Objectives: To identify research priorities related to the diagnosis, treatment and management of lipoedema.

Design: This was a research question priority-setting that ensured the involvement of patients, relatives and healthcare professionals in all parts. It consisted of the following steps: identifying research questions through an open survey, seeking input from patients, patient relatives and healthcare professionals. Prioritisation, including a Delphi exercise and a final priority-setting meeting.

Setting: Swedish healthcare and community.

Participants: A total of 255 participants submitted research questions. 130 participated in the prioritisation of the submitted questions. Of these, 89 were patients, 10 were relatives, 19 were healthcare professionals and 12 were representatives of patient organisations.

Results: 1314 potential research questions were submitted; 62 unique questions remained after analysis. 130 and 123 people answered the first and second Delphi surveys, respectively. 20 questions were discussed by 13 participants at the final priority-setting meeting. The following five research questions were selected as a top priority: (1) what criteria should apply for a diagnosis of lipoedema? (2) What outcomes are important in lipoedema research? (3) What effect does manual treatment, such as manual lymphatic drainage have on lipoedema? (4) What effect does liposuction have on lipoedema? (5) What are the effects of hormonal treatment on lipoedema?

Conclusions: We found a consensus between patients and healthcare professionals on topics that warrant priority in future research into lipoedema. The questions reflect both the diagnosis of the condition and research on treatment effects. We hope the results will inform researchers and research funders, and direct future studies towards important research questions.

Background: Lipedema is a relatively unknown condition, often leading to misdiagnosis and a lack of proper treatment.

Purpose: To explore the experiences of seeking healthcare support and treatment among women with a physician-verified diagnosis of lipedema.

Methods: Twelve women with lipedema, verified by medical examination, were interviewed using semi-structured interviews. The transcribed data was analyzed using qualitative content analysis with an inductive approach and abstracted to visualize manifest and latent meanings.

Results: The theme "Pushing the barricaded doors to treatment and care while fighting to illuminate the shadows of lipedema" describes the experiences of women being denied subsidized treatment and disregarded by healthcare professionals. The theme is based on three categories "Experiencing societal injustice and gatekeeping in healthcare services", "Combating prejudice and stigmatization with increased awareness", and "Having a solid desire for improved and affordable treatment options". Women with lipedema described feelings of being abandoned by decision-makers and healthcare. When in need of symptom relief, women with lipedema searched and attempted different therapies, and when treatment were available, the women would have to pay for it themselves.

Conclusion: Lipedema remains an unknown disease with few available treatments in subsidized healthcare. Lack of experience regarding lipedema among healthcare professionals and their failure to assess the condition risks damaging the confidence of affected women. Therefore, increased awareness and education of healthcare personnel to increase the clinical recognition of lipedema are necessary first steps to reducing misdiagnosis, improve patient satisfaction, and the availability of care among patients with lipedema.

Purpose: To describe and analyse experiences of living with lipedema. Methods: Individual, semi-structured interviews with a purposive sample of 12 women diagnosed with lipedema and analysed by qualitative content analysis utilizing an inductive approach.

Results: The overarching theme, “An uncertain uphill battle against a divergent body and societal ignorance”, covers the experiences of living with lipedema and is based on five categories; “Captivated by a disintegrating body”, “Face the impairments of a chronic condi-tion”, “Experience social exclusion”, “Need emotional support to go on” and “Mull over an insecure future”. The women felt entrapped within their bodies and experienced social exclusion due to the chronic symptoms and the progressive body shape alteration caused by their illness. Having experienced deficient information on the illness, varying support from other people, and a deteriorating economic situation, the women face an uncertain future.

Conclusions: Symptoms and restrictions caused by lipedema affect women’s livelihood and future, as there are no indications for disease improvement. Preventive work aimed at reducing health deterioration should be a priority. More research is needed to raise health-care awareness regarding difficulties experienced by patients with lipedema.