Background Multiple myeloma is a non-curable haematological cancer. Patients therefore must adapt to living with a cancer that requires periods of intensive and maintenance therapies. While treatment has improved outcomes, it remains aggressive and results in numerous physical, psychosocial and existential effects that can be debilitating and change over time. The needs of these patients is largely unexplored and impacts on the delivery of tailored care.
Aim A haematology survivorship team sought to understand the psychosocial, practical and educational and practical needs from the perspectives of survivors of multiple myeloma.
Methods Patients >25 years of age who had been diagnosed with multiple myeloma 6-52 months previously were invited to participate in one of two focus groups. A psychologist experienced in focus group moderation with cancer patients led each 90 minute audio recorded focus group using a semi structured interview guide. Transcripts were coded using thematic analysis with NVivo software.
Results Seven females and seven males participated. Three themes emerged: 1) participants felt sad and isolated as nobody including family and friends understood that living with myeloma is living with “lifelong cancer” and is quite different to living after treatment for other cancers; 2) participants wanted to build a relationship with a known health professional (e.g. nurse) to whom they could ask “any” questions and contact for advice and support; and 3) participants felt a lack of myeloma-specific practical and emotional support.
Conclusion Adults living with multiple myeloma have unmet needs for emotional, practical and educational support and care coordination. Results suggest the addition of a specialist nurse or other health professional may improve patients’ transition to living with multiple myeloma, particularly for emotional, educational and practical support.