Lymphedema Research Prioritization Partnership: A Collaborative Approach to Setting Research Priorities for Lymphedema Management

Emma Underwood, DipCOT, MClinRes,1 Mary Woods, RGN, BSc (Hons), MSc,2 Katie Riches, BSc (Hons), RN,3,4* Vaughan Keeley, PhD, FRCP,5,6 Anita Wallace,7 and Jennifer Freeman, BAppSc (Physiotherapy), PhD8 Lymphatic Research Biology, 2018

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Lymphedema Research Prioritization Partnership: A Collaborative Approach to Setting Research Priorities for Lymphedema Management

Emma Underwood, DipCOT, MClinRes,1 Mary Woods, RGN, BSc (Hons), MSc,2 Katie Riches, BSc (Hons), RN,3,4* Vaughan Keeley, PhD, FRCP,5,6 Anita Wallace,7 and Jennifer Freeman, BAppSc (Physiotherapy), PhD8 Lymphatic Research Biology, 2018

Background: 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.

Methods and Results: 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.

Conclusions: 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.

Main findings

The top 10 Research Priorities for the Treatment and Management of Lymphedema in the United Kingdom

  1. What early intervention modalities are the most effective in preventing or controlling lymphedema and preventing long-term complications?
  2. How effective are self-management regimes on the long-term management of lymphedema?
  3. Is it possible to promote the rerouting of lymphatic vessels with noninvasive treatment modalities to improve lymphatic drainage in lymphedema?
  4. How does exercise affect lymphatic flow, what exercises are the most beneficial for improving lymphatic drainage in upper and lower limb lymphedema and midline lymphedema (head and neck, trunk and genital) and what is the optimum protocol for these?
  5. What are the differential diagnostic criteria for cellulitis, erysipelas, inflammation, and bilateral red legs and how can these be utilized to enable prompt diagnosis and treatment by all care providers?
  6. What predictive risk factors are there for developing cancer-related lymphedema and how could these be assessed to reduce risk and inform cancer treatment decisions?
  7. Is MLD an effective treatment to improve the symptoms of and manage lymphedema and what are the long-term benefits of a course of MLD?
  8. What are the indications for surgical treatment of lymphedema and at what stage should each surgical technique optimally be used?
  9. Is ongoing specialist review needed for long-term management of lymphedema or can patients be safely discharged with self-management and review by generalist services?
  10. Which specific exercise regimes (i.e., swimming, walking, Pilates, yoga, weight training) are the most beneficial in improving lymphatic drainage of the upper and lower limb and which are contraindicated?