Background: Australian cancer survivors identify lymphoedema (LO) as a significant unmet care need. Many barriers to care delivery have been identified but there is limited data on priorities and preferences for improving outcomes from the perspective of diverse stakeholders involved in LO care including health care providers, researchers and consumers. This presentation will report on the findings of stakeholder consultations conducted in person and online exploring stakeholder views on key priorities for improving LO care in Australia.
Methods: Cancer survivors with lived experience of LO in diverse cancer types (e.g., breast, melanoma, head and neck cancer, gynecological cancer; n= 19), and health care professionals and researchers representing diverse disciplines (i.e., oncology, nursing, general practice, physiotherapy, exercise physiology, lymphoedema therapy, dermal scientist; n = 36) participated in a face to face workshop (n=24) and an online workshop (n=31). All Australian state and territories were represented with 17 participants coming from or working within rural or regional settings. Furthermore, 9 participants represented organisations or provide LO advocacy and care at the state or national level.
Results: Participants identified a number of priorities for improvement of LO care including improvement of patient and professional education, care navigation, workforce capacity, equity of access and cost. A unique challenge and an opportunity for better LO care was greater recognition of LO as a chronic, complex condition rather than an acute skin toxicity with resulting implications on the most appropriate models of care.
Conclusion: These multidisciplinary stakeholder workshops identified a range of priorities for improvement of LO care than can inform care delivery, policy and research priorities.