"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.