Lipoedema research priorities: a Swedish priority-setting partnership for future treatment and diagnostic studies

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. Data are available upon reasonable request.