Underwood Emma, Woods Mary, Riches Katie, Keeley Vaughan, Wallace Anita, Freeman Jennifer
1 Lymphoedema Clinic, Therapy Department, PAW, Royal Cornwall Hospital NHS Trust, Truro, United Kingdom.
2 Lymphoedema Service, Royal Marsden Hospital, London, United Kingdom.
Lymphat Res Biol. 2019 Jun;17(3):356-361. doi: 10.1089/lrb.2018.0026. Epub 2018 Oct 24.
More research is needed in lymphedema management to strengthen the evidence base and ensure patients receive clinically and cost-effective treatment. It is critical that patients and clinicians are involved in prioritizing research to ensure that it reflects their needs and is not biased by commercial interests. This study aimed to set the research priorities for lymphedema management in the United Kingdom, through collaboration with patients, carers, and clinicians. Following the James Lind Alliance's methodology, a national survey was conducted to identify unanswered questions about lymphedema management from the perspective of patients, carers, and clinicians. These were collated and verified against an in-depth evidence review. Unanswered questions were formatted into broad research questions, which were prioritized by a purposive sample of patients, carers, and clinicians, using an online Delphi survey. The initial survey generated 631 submissions from 213 participants, including 108 patients, 9 carers, and 88 clinicians. Of these, 485 met inclusion criteria and were grouped into 12 overarching themes. The evidence review demonstrated that 101 submissions were answered by existing research and identified an additional 78 questions. The remaining unanswered submissions were collated into 126 broad research questions, which were prioritized over four rounds of the Delphi survey to produce the top 10 priorities. This study is the first to attempt to systematically identify research priorities for lymphedema management in the United Kingdom, from the perspective of patients, carers, and clinicians. The results provide guidance for researchers and funders to ensure future research meets the needs of those living with lymphedema.
在淋巴水肿管理方面需要进行更多研究，以加强证据基础，并确保患者获得具有临床效果且性价比高的治疗。患者和临床医生参与确定研究重点至关重要，以确保研究反映他们的需求，且不受商业利益的影响。本研究旨在通过与患者、护理人员和临床医生合作，确定英国淋巴水肿管理的研究重点。遵循詹姆斯·林德联盟的方法，开展了一项全国性调查，从患者、护理人员和临床医生的角度确定有关淋巴水肿管理的未解决问题。这些问题经过整理，并对照深入的证据审查进行核实。未解决的问题被整理成广泛的研究问题，通过在线德尔菲调查，由患者、护理人员和临床医生的目标样本对这些问题进行优先排序。初步调查收到了来自213名参与者的631份提交内容，包括108名患者、9名护理人员和88名临床医生。其中，485份符合纳入标准，并被归为12个总体主题。证据审查表明，现有研究回答了101份提交内容，并确定了另外78个问题。其余未解决的提交内容被整理成126个广泛的研究问题，在四轮德尔菲调查中对这些问题进行优先排序，以得出前10个优先事项。本研究首次尝试从患者、护理人员和临床医生的角度系统地确定英国淋巴水肿管理的研究重点。研究结果为研究人员和资助者提供了指导，以确保未来的研究满足淋巴水肿患者的需求。
