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Lymphoedema management by independent hospices: a cohort study
  1. Andrea Brown1,
  2. Carol Nicholson2,
  3. Adam Fearing1,
  4. Julia Newton3,
  5. Simon Gordon4,
  6. Andrew Hughes4,
  7. Andrea Egdell4 and
  8. James Ellam4
  1. 1 North East Quality Observatory Service, Gosforth, UK
  2. 2 Academic Health Science Network; North East and North Cumbria (AHSN NENC), Newcastle, UK
  3. 3 Medical Director, Newcastle, UK
  4. 4 St Oswald's Hospice, Newcastle, UK
  1. Correspondence to Professor Julia Newton, Medical Director, Newcastle, UK; julia.newton{at}


Objectives To consider the type and cost of clinical services delivered for patients with lymphoedema.

Design Clinical cohort.

Setting Independent hospices in the North East of England.

Participants All those attending lymphoedema services delivered by the independent hospice sector 2017/2018.

Results 13 914 lymphoedema appointments were recorded across four independent hospices. Twelve thousand nine hundred and sixty-five were attended, which equates to an approximate cost of £1.56 million. Those with lymphoedema were predominately aged over 65 (54.5%) years with females across all age groups being more predominant (3.3:1). Where the cause was recorded, 66% of activity related to lymphoedema was not secondary to cancer.

Conclusion Independent hospices are providing a specialist lymphoedema service, which is high in volume and largely invisible. This service is delivered at not insignificant cost. In contrast to previous work, in the North East of England, lymphoedema sufferers are more likely to be female and not have the condition in association with cancer. The availability of rigorous data collection will allow the independent hospices to understand better the delivery and associated costs of lymphoedema services.

  • skin care
  • lymphoedema
  • hospice care

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  • Contributors CN conceived the project, developed the dataset and oversaw data collection. AB and AF refined the data set, analysed the data and produced the first draft of the report. JN conceived the project, developed the dataset, analysed the data and drafted the paper. SG, AH, AE and JE oversaw the project and interpreted the data. All authors reviewed and approved the manuscript.

  • Funding The data collection was supported by a grant from the James Knott Trust and from the Academic Health Science Network NENC.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Data are available upon reasonable request.

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