Treatment preferences of patients with relapsed and refractory multiple myeloma: a qualitative study

Janet A Parsons,Lisa K Hicks,Natalie A Baker,Nicole R Greenspan,Chris Mckillop,Olivia Chan

doi:10.1186/s12885-019-5467-x

Abstract

BackgroundMultiple myeloma is a haematological malignancy characterized by significant morbidity and mortality. This study sought to develop an in-depth understanding of patients’ lived experiences of relapsed or refractory multiple myeloma (RRMM) and its treatment, and to identify which features of treatment were most important to them.MethodsQualitative interviews and focus groups (FGs) were conducted with 32 people living with RRMM across Canada. In Phase 1, interviews focused on participants’ accounts of their experiences with the disease and its treatment and laid the groundwork for the FGs (Phase 2). The FGs developed a deeper understanding of patients’ treatment priorities. Interview and FG transcripts were coded for emergent themes and patterns.ResultsThe interviews identified important side effects that had significant impacts on patients’ lives, including physical, cognitive, and psychological/emotional side effects. Participants also identified specific treatment features (attributes) that were important to them. These were compiled into a list and used in the FGs to understand patients’ priorities. Higher prioritized attributes were: life expectancy, physical and cognitive side effects, and financial impact. Mode of administration, treatment intervals, psychological side effects, and sleep/mood effects were identified as lower priorities.ConclusionsRRMM and its treatments impact importantly on patients’ quality-of-life across a range of domains. Patients prioritized treatment features that could enhance life expectancy, minimize side effects and offset financial burdens.Implications for cancer survivorsA clear articulation of patient priorities can contribute to efforts to design treatment with patients’ concerns in mind, thereby promoting a more patient-centered approach to care.

Highlights

Multiple myeloma is a haematological malignancy characterized by significant morbidity and mortality
Even less is known about MM patients’ treatment preferences, and how these preferences are shaped by their long-term experiences of cancer survivorship
One quantitative study reported on health-related quality-of-life (HRQL) in relation to treatment-free intervals [2]; its use of quantitative survey methods did not permit an in-depth consideration of patients’ experiences or the contexts that influenced their experiences of care [11, 16]

Summary

Introduction

Multiple myeloma is a haematological malignancy characterized by significant morbidity and mortality. This study sought to develop an in-depth understanding of patients’ lived experiences of relapsed or refractory multiple myeloma (RRMM) and its treatment, and to identify which features of treatment were most important to them. Multiple myeloma (MM) is the second most common haematologic malignancy, and is characterized by significant morbidity and mortality [1, 2]. Even less is known about MM patients’ treatment preferences, and how these preferences are shaped by their long-term experiences of cancer survivorship. This is especially important given the significant quality-of-life issues faced by patients living with RRMM. In order to develop and deliver truly patient-centered care, the voices of patients must be brought into the priority-setting arena

Methods

Results

Discussion

Conclusion