Understanding lymphoma and leukemia survivors’ concerns: a focus group study — ASN Events
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Understanding lymphoma and leukemia survivors’ concerns: a focus group study (#320)

Leanne Monterosso 1 , Violet Platt 2 3 , David Joske 4 5 , Toni Musiello 4 6 , Karen M Taylor 1 2
  1. University of Notre Dame Australia / St John of God Murdoch Hospital, Fremantle, WA, Australia
  2. Cancer and Palliative Care Network, WA Department of Health, Perth, WA, Australia
  3. School of Nursing and Midwifery, Edith Cowan University, Joondalup, WA, Australia
  4. Department of Haematology, Sir Charles Gairdner Hospital, Nedlands, WA, Australia
  5. School of Medicine, University of Western Australia, Nedlands, WA, Australia
  6. Cancer and Palliative Care Research Evaluation Unit, WA Cancer and Palliative Care Network, Nedlands, WA, Australia

Background Haematological cancers are a unique group of cancers. Treatment is aggressive and complex, resulting in debilitating side effects from multi-modal therapies and disease-related problems. Many people are left with physical, psychological, social and existential needs that affect general health and well-being. These concepts are not new in cancer survivorship literature, yet remain relatively unexplored in relation to people who have completed treatment for lymphoma/leukaemia.

Objective A survivorship team sought to understand the psychosocial, practical and educational and practical needs from the perspectives of survivors of lymphoma/leukaemia.

Methods 19 patients >25 years of age who had completed treatment for leukaemia/lymphoma 6-48 months previously participated 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 Ten females and nine males participated. Four themes emerged; participants (1) wanted to build a relationship with someone (e.g. nurse coordinator) to whom they could ask questions and contact for advice/support; (2) were still treatment-focused, feeling “stuck” and unable to move on; (3) felt a sense of loss as their “normal” had forever changed and they were experiencing difficulty adjusting and/or finding a “new normal”; and (4) felt a lack of practical and emotional support and wanted to build a connection with someone that cared about them and could help them put their life back together.

Conclusion Adult of leukaemia/lymphoma survivors have unmet needs for emotional support and survivorship care coordination. Results suggest the addition of a specialist survivorship coordinator for follow-up care may improve survivors’ transition to post treatment life, particularly for emotional and practical support.

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