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

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.

Patient Perceptions Regarding Multiple Myeloma and Its Treatment: Qualitative Evidence from Interviews with Patients in the United Kingdom, France, and Germany

“…As in previous studies, patients reported high symptom burden, including symptoms associated with HRQoL [1,2,4,5,7,9]. In agreement with another qualitative study on treatment preferences in MM [3], symptoms such as fatigue and bone pain, and side effects such as gastrointestinal symptoms and peripheral neuropathy, were the most frequently discussed by patients as significantly disruptive to HRQoL.…”

“…Multiple myeloma (MM) is the second most common hematological cancer and is characterized by high levels of mortality [1][2][3][4]. Despite recent treatment advances, MM remains incurable [1][2][3][5][6][7][8] and becomes harder to treat over time [2,3,8]. Development of new treatment options, particularly those that can be tolerated over the long term, is an ongoing priority.…”

Challenges in the cultural adaptation of the German Myeloma Patient Outcome Scale (MyPOS): an outcome measure to support routine symptom assessment in myeloma care

“…Unlike the MDASI-MM and the EORTC-QLQ-MY20, the MyPOS contains more items regarding worry about the future, information needs, and coping processes as well as adaptation processes, all relevant to and reflecting the prolonged disease trajectory. These issues have also been highlighted as important in recent qualitative studies focusing on the advanced myeloma population [11][12][13]57,58]. The MyPOS was developed as a tool to go beyond the simple assessment of symptom status and asking for an evaluation of physical, emotional, spiritual, and QoL morbidity.…”

Challenges in the cultural adaptation of the German Myeloma Patient Outcome Scale (MyPOS): an outcome measure to support routine symptom assessment in myeloma care

“…Unlike the MDASI-MM and the EORTC-QLQ-MY20, the MyPOS contains more items regarding worry about the future, information needs, and coping processes as well as adaptation processes, all relevant to and reflecting the prolonged disease trajectory. These issues have been also highlighted as important in recent qualitative studies focusing on the advanced myeloma population [11][12][13]57,58]. The MyPOS was developed as a tool to go beyond the simple assessment of symptom status and asking for an evaluation of physical, emotional, spiritual, and QoL morbidity.…”