Treatment decision making (TDM): a qualitative study exploring the perspectives of patients with chronic haematological cancers

Abstract

ObjectivesHaematological malignancies are the fifth most common cancer in the UK, with chronic subtypes comprising around a third of all new diagnoses. These complex diseases have some similarities with other cancers, but often require different management. Surgical resection is not possible, and while some are curable with intensive chemotherapy, most indolent subtypes are managed with non-aggressive intermittent or continuous treatment, often over many years. Little is known about the views of patients with chronic haematological cancers regarding treatment decision making (TDM), a deficit our study aimed to address.Setting and designSet within the Haematological Malignancy Research Network (HMRN: www.hmrn.org), an ongoing population-based cohort that provides infrastructure to support evidence-based research, HMRN data were augmented by qualitative information from in-depth interviews. Data were analysed for thematic content, combining inductive and deductive approaches. Interpretation involved seeking meaning, salience and connections within data.ParticipantsThirty-five patients with four chronic subtypes: chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma, and myeloma. Ten relatives were present and contributed to varying extents.ResultsFive themes were discerned: (1) Preference for clinician recommendations; (2) Factors implicated in patient involvement in TDM; (3) Perceptions of proactive/non-proactive approaches to TDM; (4) Experiences of TDM at various points in the disease trajectory; (5) Support from others. Our principal finding relates to a strong preference among interviewees for treatment recommendations from haematologists, based on trust in their expertise and perceptions of empathetic patient–clinician relationships.ConclusionInterviewees wanted to be involved in TDM to varying extents, contingent on complex, inter-related factors, that are dynamic and subject to change according to differing clinical and personal contexts. Patients may benefit from clinicians assessing their shifting preferences for involvement on multiple occasions. Strong preferences for acceptance of recommendations was associated with cancer complexity, trust in clinician expertise and positive perceptions of patient–clinician relationships.

Multiple Myeloma in People of Working Age: A Systematic Review and Evidence Synthesis of Experiences of Paid and Unpaid Work

“…Absent from the data was refection of colleagues being involved as sounding boards for treatment decision making. While this was noted as a role occupied by friends/family [48,66] no such input was noted for colleagues. Tis may refect participants framing their accounts as discussion with friends, when the individual is both friend and colleague.…”

“…Revisiting and changing priorities meant that the old work identity was substituted for a new one, such as newly becoming self-employed or becoming a stay-at-home parent [46,53]. Serious illness destabilised some anticipated futures and disrupted people's ability to plan for the future including retirement [66,70]. Confguring a sense of self while unable to engage in usual activities resulted in people weighing up their priorities, with some wishing to privilege other activities, and some contrasting the myeloma-saturated life as an unwelcome element to integrate into their identity.…”

“…. your brain is working on so many diferent levels (60-70 year old patient, gender not stated, [66]).…”

Communication Strategies of Transplant Hematologists in High-Risk Decision-Making Conversations

“…[15][16][17] Ultimately, patients must decide whether to pursue alloHCT versus an alternative pathway that may prolong their life and/or help with symptoms but offer no chance for cure. [18][19][20] Despite reported limitations of hematologists' communication, [21][22][23][24][25] we do not know how they discuss alloHCT and engage patients in decision making.…”

Patient and carer experiences of living with multiple myeloma and myelodysplastic syndrome

“…Qualitative studies in chronic haematological malignancies such as MM and MDS have examined treatment decision‐making, 7,8 prognosis, 9 and distress 10 . Qualitative studies in MM spanned a range of areas including younger patients, longer‐term survivors, and cognitive impairment 11 .…”