Gitte Lee Mortensen and Morten Salomo
Abstract
Objective: Multiple myeloma (MM) accounts for approximately 15% of hematological cancers. Although still incurable, the prognosis of MM has much improved within the past two decades due to the use of high-dose chemotherapy (HDT) supported by autologous stem-cell transplantation (ASCT) for eligible patients and a variety of novel agents. How to use and sequence these new potent treatments is a growing challenge. While focus is on efficiency and tolerability, the ultimate goal is the reestablishment and preservation of patients’ quality of life (QoL). This has increased the relevance of examining MM patient’s QoL and experiences as long-term survivors. This qualitative study therefore aimed to gain in-depth knowledge about health related QoL in patients with relapsingremitting MM (RRMM).
Methods: A literature study identified topics for individual in-depth qualitative interviews with eight Danish myeloma patients, four women and four men. Semi-structured interview guides were applied exploring the participants’ experiences with the course of disease and treatment, its impact on their physical, cognitive and psychosocial QoL and functioning, and if they had unmet care needs. The interviews were transcribed verbatim and analysed using a narrative medical anthropological approach aiming to elicit significant patterns in the patients’ perspectives on the impact of MM on their QoL.
Results: The participants had ambiguous perceptions of MM that was simultaneously seen as life menacing and manageable. Their physical and cognitive functioning was reduced from disease symptoms and treatmentrelated toxicity. Persistent peripheral neuropathy was considered particularly burdensome. The initial shock of receiving a cancer diagnosis was reduced by reassurance of the high manageability of MM. In the long run, the participants were able to lead ‘fairly normal’ lives but said their QoL was reduced by concerns about underlying disease, relapse and disability. Being able to uphold a social role and meaningful activities was crucial to their QoL. Overall, the participants did not discuss HRQoL issues with their oncologist, however, because the main focus in consultations is on cancer control.
Conclusion: Long-term QoL in patients with MM may be over-estimated. Their disease perspectives and priorities should be explored and taken into account when making treatment decisions. Newly diagnosed patients may have particular needs for emotional support and information about the improved manageability of MM.
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