Dahlberg Johan, Österberg Marie, Hellberg Christel, Stenman Jenny, Fundell Sara, Andersson Åsa G, Edling Silvia, Liss Anders
Department of Public Health and Clinical Medicine, Dermatology and Venereology, Umeå University, Umea, Sweden.
Department of Dermatology and Venereology, University Hospital of Northern Sweden, Umea, Sweden.
BMJ Open. 2025 Aug 28;15(8):e086869. doi: 10.1136/bmjopen-2024-086869.
To identify research priorities related to the diagnosis, treatment and management of lipoedema.
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.
Swedish healthcare and community.
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.
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?
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.
确定与脂肪性水肿的诊断、治疗和管理相关的研究重点。
这是一项研究问题优先级设定，确保患者、亲属和医疗保健专业人员参与各个环节。它包括以下步骤：通过开放式调查确定研究问题，征求患者、患者亲属和医疗保健专业人员的意见。进行优先级排序，包括德尔菲法练习和最终的优先级设定会议。
瑞典医疗保健和社区。
共有255名参与者提交了研究问题。130人参与了对提交问题的优先级排序。其中，89名是患者，10名是亲属，19名是医疗保健专业人员，12名是患者组织的代表。
共提交了1314个潜在研究问题；分析后剩下62个独特问题。分别有130人和123人回答了第一次和第二次德尔菲调查。13名参与者在最终的优先级设定会议上讨论了20个问题。以下五个研究问题被选为首要优先事项：（1）脂肪性水肿的诊断应适用哪些标准？（2）脂肪性水肿研究中哪些结果很重要？（3）手动治疗，如手动淋巴引流，对脂肪性水肿有什么影响？（4）抽脂对脂肪性水肿有什么影响？（5）激素治疗对脂肪性水肿有什么影响？
我们发现患者和医疗保健专业人员在脂肪性水肿未来研究中应优先考虑的主题上达成了共识。这些问题既反映了该病症的诊断，也反映了对治疗效果的研究。我们希望这些结果能为研究人员和研究资助者提供信息，并将未来的研究导向重要的研究问题。
