OP40 Patient experiences of living with chronic haematological malignancies and their preferences for psychosocial support: findings from a qualitative study

Background

Chronic haematological malignancies (blood cancers) are incurable but treatable. Following unpredictable relapsing-remitting pathways, they can be successfully managed for long periods with observation interspersed with treatment if required (‘Watch and Wait’, W&W). Patients are known to experience difficulties due to W&W, yet there is little qualitative research exploring this approach, as well as general experiences of living with chronic blood cancers, and preferences for psychosocial support.

Methods

Set within a population-based cohort, purposive sampling was used to identify potential participants with chronic lymphocytic leukaemia (CLL), follicular lymphoma (FL), marginal zone lymphoma (MZL) or myeloma. Thirty-five patients were interviewed (10 with relatives) February-October 2019. Interviews were audiotaped, transcribed, and analysed thematically using an exploratory, inductive approach.

Results

Two overarching themes were identified: 1) Understanding and uncertainty regarding chronic haematological malignancies; and 2) Divergent and fluctuating approaches to psychosocial support. Patients had little prior knowledge of haematological malignancies; and difficulty understanding how their cancer could be incurable, but treatable for long periods of time, and why they were not treated immediately (W&W). Such uncertainty could result in significant emotional distress, which could be more burdensome than physical symptoms. Support needs varied depending on patients’ individual preferences and attitudes towards the cancer and its trajectory. Psychosocial support was available through various sources including peer support groups, family and friends, and health care professionals. Meeting others with the same malignancy could provide information and reassurance for some, whilst others described an aversion to exposure to negative stories. Family and friends provided significant emotional support, but patient perceptions of their malignancy, and the broader context of individual patients’ lives, impacted the support they would accept. Whilst health care professionals could provide valuable support, positive engagement was influenced by treatment pathway; those on W&W had fewer opportunities to discuss concerns.

Conclusion

Living with a chronic blood cancer can cause significant emotional distress among patients, due to uncertain, unpredictable pathways, experienced over years/decades. This was often compounded by W&W, which can appear illogical as it contradicts public-health messages emphasising the importance of early treatment. Options for psychological support varied as did patient preferences for this. Frequent monitoring and discussion of support and information needs is important, yet may be limited by resource-availability in health care settings. The issue of long-term support for patients with chronic cancers is crucial in the context of ‘survivorship’, which typically refers to a ‘beyond treatment’ phase that these patients never reach.