“Do I buy my children shoes, or do I get a compression garment for my lymphoedema?” Australian stakeholder perspectives on cancer-related lymphoedema care

Purpose: To identify the experiences and challenges some cancer survivors face in managing lymphoedema and to explore how they and healthcare professionals can best address them. 

Methods: A qualitative participatory methodology was employed, involving two stakeholder consultation workshops (one face-to-face and one online). Sessions were audio-recorded, and thematically analysed. Workshops involved 55 participants, comprising people with lived experience of diverse cancers (n = 19) and multidisciplinary healthcare professionals (n = 36) in Australia. 

Results: Participants identified three key challenges: awareness, access, and financial burden. These informed the identification of three key enablers for better consumer-centred care: patient and provider education/training, care pathway, and recognition of lymphoedema as a chronic disease. The need for a national registry system was identified as a key enabler to quantify the burden of disease to support equitable access to resources and treatment. 

Conclusion: Cancer survivors at risk of, or experiencing lymphoedema, face significant challenges that could be overcome through initiatives prioritising self-management education and clinician training, navigation, and reimbursement for care. 

Implications for Cancer Survivors: Lymphoedema risk reduction and management remains a neglected aspect of survivorship care but survivors and healthcare providers identify a number of strategies to improve lymphoedema care that warrant examination.