Applied Health Research Centre, Li Ka Shing Knowledge Institute, St. Michael's Hospital, 30 Bond St., Toronto, ON, M5B 1W8, Canada.
Department of Physical Therapy and the Rehabilitation Sciences Institute, University of Toronto, 160-500 University Ave., Toronto, ON, M5G 1V7, Canada.
BMC Cancer. 2019 Mar 25;19(1):264. doi: 10.1186/s12885-019-5467-x.
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.
Qualitative 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.
The 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.
RRMM 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.
A 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.
多发性骨髓瘤是一种血液系统恶性肿瘤,其发病率和死亡率均较高。本研究旨在深入了解复发/难治性多发性骨髓瘤(RRMM)患者的患病体验及其治疗情况,并确定治疗的哪些特征对患者最重要。
在加拿大各地,对 32 名 RRMM 患者进行了定性访谈和焦点小组(FG)。在第 1 阶段,访谈重点关注参与者对疾病及其治疗的体验,为 FG(第 2 阶段)奠定基础。FG 深入了解了患者的治疗重点。对访谈和 FG 记录进行了编码,以提取出现的主题和模式。
访谈确定了对患者生活有重大影响的重要副作用,包括身体、认知和心理/情绪副作用。参与者还确定了对他们重要的特定治疗特征(属性)。这些特征被列入清单,用于了解患者的治疗优先级。优先级较高的属性包括:预期寿命、身体和认知副作用以及经济影响。给药方式、治疗间隔、心理副作用和睡眠/情绪影响被认为是较低优先级。
RRMM 及其治疗对患者生活质量的多个领域产生重要影响。患者优先考虑那些能提高预期寿命、最小化副作用和减轻经济负担的治疗特征。
明确表达患者的治疗重点可以有助于努力以患者的关注点为出发点来设计治疗方案,从而促进更以患者为中心的护理方法。