Oral Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2023

Towards an estimate of the prevalence of lymphoedema in Australia (#22)

Katherine Faulks 1 , Sue Barker 1 , Sophie Lindquist 1
  1. Australian Institute of Health and Welfare, Canberra, ACT, Australia

Background: Lymphoedema is a chronic condition requiring lifelong care and management from a multidisciplinary team. If left unmanaged lymphoedema will cause increasing morbidity for the individual. Lymphoedema can occur following treatment for several cancers that typically involve the biopsy, dissection, or radiotherapy of the local lymph nodes. These cancers include breast, gynaecological, melanoma, head and neck and genito-urinary. There is no Australian prevalence estimate for the number of people living with lymphoedema.

Aim: To assess the utility of a range of data sources to provide an estimate of the prevalence of lymphoedema in Australia.

Methods: Data sources with a collection period of at least up to and including 2015 were assessed for potential to inform key monitoring areas - risk factors for lymphoedema, presence of the condition and demographics of the study sample. The quality of the data was documented.

Results: The data sources with the most utility for informing the prevalence of lymphoedema in Australia are the Australian Cancer Database, General Practice data and the National Hospital Morbidity Database.

  • In 2020–21, there were 9,400 hospitalisations for lymphoedema (30 per 100,000 population), with the rate higher for females (6,500; 40 per 100,000 population) than for males (2,900; 20 per 100,000).
  • Based on the incidence of cancer in 2022, it is estimated that 4,100 people with breast cancer and between 1,600 and 5,100 people with melanoma of the skin will go on to develop secondary lymphoedema.

Conclusions: No single data source can provide an estimate of the prevalence of lymphoedema in Australia. Several data sources were determined to contain information on people living with lymphoedema, however, the story contains many gaps and more work needs to be done to provide the information/evidence that is needed to plan for and provide the essential treatment and management services to those with lymphoedema.