Living with multiple myeloma: A focus group study of unmet needs & preferences for survivorship care

This exploratory, descriptive study conducted two focus groups of individuals 6-49 months post-diagnosis, to understand the preferences for post-treatment survivorship care in Western Australia. They aimed to describe the unmet informational, psychological, emotional, social, practical and physical needs. Thematic analysis revealed 7 key themes: information needs, experience with health care professionals, coping with side effects, communicating with family and friends, dealing with emotions, support needs and living with myeloma. Participants spoke positively about GPs when cancer symptoms were recognised and communicated effectively, but negatively by those who received a delayed diagnosis. Most participants felt health professional support and guidance in dealing with treatment side effects was inadequate. Participants in this study described unmet needs across many domains and the development of person-centred approaches to comprehensive survivorship care is needed to address the considerable quality of life issues experienced by people living with multiple myeloma.

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