Incurable but treatable: Understanding, uncertainty and impact in chronic blood cancers-A qualitative study from the UK's Haematological Malignancy Research Network.

Debra A Howell,Alexandra G Smith,Eve Roman,Russell Patmore,Dorothy Mccaughan,Andrew Soundy

doi:10.1371/journal.pone.0263672

Debra A Howell, Alexandra G Smith + Show 4 more

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https://doi.org/10.1371/journal.pone.0263672

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Journal: PloS one	Publication Date: Feb 10, 2022
Citations: 19	License type: CC BY 4.0

Affiliation: University of York, Castle Hill Hospital

Abstract

ObjectiveMost blood cancers are incurable and typically follow unpredictable remitting-relapsing pathways associated with varying need for treatment, which may be distressing for patients. Our objective was to conduct a qualitative study to explore understanding among patients with such malignancies, including the explanations given by HCPs and the impact of uncertain trajectories, to generate evidence that could guide improvements in clinical practice.MethodsThe study is set within a population-based patient cohort (the Haematological Malignancy Research Network), in which care is delivered across 14 hospitals according to national guidelines. In-depth interviews were conducted with 35 patients with chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma or myeloma; and 10 accompanying relatives. Purposive sampling ensured selection of information-rich participants and the data were interrogated using reflective thematic analysis.ResultsRich data were collected and four themes (11 sub-themes) were identified: 1) Knowledge and understanding of chronic haematological malignancies; 2) Incurable but treatable; 3) Uncertainty about the future; and 4) Treatable (but still incurable): Impact on patients. Patients had rarely heard of blood cancer and many expressed difficulty understanding how an incurable malignancy that could not be removed, was treatable, often for long periods. While some were reassured that their cancer did not pose an immediate survival threat, others were particularly traumatised by the uncertain future it entailed, suffering ongoing emotional distress as a result, which could be more burdensome than any physical symptoms. Nonetheless, most interviewees understood that uncertain pathways were caused by the unpredictability of their disease trajectory, and not information being withheld.ConclusionsMany participants lacked knowledge about chronic haematological malignancies. HCPs acted to reassure patients about their diagnosis, and while this was appropriate and effective for some, it was less so for others, as the cancer-impact involved struggling to cope with ongoing uncertainty, distress and a shortened life-span.

Highlights

Arising in blood and lymph forming tissues, haematological malignancies are collectively the fifth most common cancer grouping in economically developed countries [1, 2]
Some of these cancers are potentially curable with intensive chemotherapy, around 60% are not; the latter typically comprising more chronic or indolent diseases (e.g. chronic lymphocytic leukaemia (CLL), follicular lymphoma (FL), marginal zone lymphoma (MZL) and myeloma) [4]
Haematological Malignancy Research Network (HMRN) has a catchment population of ~4 million, with a similar socio-demographic profile to the UK as a whole; and patient care is provided by a unified clinical network (14 hospitals), working to national guidelines

Summary

Introduction

Arising in blood and lymph forming tissues, haematological malignancies (leukaemias, lymphomas, and myelomas, known as blood cancers) are collectively the fifth most common cancer grouping in economically developed countries [1, 2]. Treatments, and outcomes, more than 100 subtypes are currently recognized by the World Health Organization (WHO) [3] Some of these cancers are potentially curable with intensive chemotherapy (e.g. diffuse large B-cell lymphoma and acute myeloid leukaemia), around 60% are not; the latter typically comprising more chronic or indolent diseases (e.g. chronic lymphocytic leukaemia (CLL), follicular lymphoma (FL), marginal zone lymphoma (MZL) and myeloma) [4]. These malignancies often have a slow manifestation, in which symptoms may be vague, intermittent and commonly seen in benign, self-limiting conditions, in older age groups, meaning cancer is not always immediately suspected [5, 6]. Behaviour is known to differ between indolent blood cancers subtypes, with progression almost certain to occur for some (e.g. myeloma), but much less likely for others (e.g. CLL), as is reflected in the five-year relative survival estimates of 48% for myeloma, compared to 86%, 88% and 80% for CLL, FL and MZL, respectively (https://hmrn.org/ statistics/survival)

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