Sir Charles Gairdner Hospital, Hospital Avenue, Nedlands, WA, 6009, Australia.
Rockingham General Hospital, Elanora Dr, Cooloongup, WA, 6168, Australia.
Support Care Cancer. 2019 Jul;27(7):2435-2442. doi: 10.1007/s00520-018-4502-9. Epub 2018 Oct 27.
Although multiple myeloma (MM) is incurable, many people live with the disease for a number of years. Thus, understanding the effect of the disease and its therapies on the lives of those with MM is important. This qualitative study explores the impact of MM and its treatments on patients.
People with newly diagnosed or relapsed MM were recruited from a tertiary institution. Participants were interviewed using a semi-structured approach. The questions were designed to obtain insight into how participants viewed their diagnosis, treatment, and symptoms and how these had impacted on their lives. Data were analysed using a phenomenological approach.
Fifteen people with MM with a mean age of 62 were recruited. Participants' mean time since diagnosis was 2.7 years and they had received a mean of 1.7 lines of therapy. The first major theme to emerge was lifestyle changes. Interviewees described MM as causing changes to all aspects of their lives, including substantial functional changes, as well as changes to employment, relationships, and their sense of self. The second major theme was 'adjust, adjust, adjust'. Alongside challenging life changes, participants described a range of practical, psychological, and relational approaches to adjusting to living with MM.
This study highlights the importance of and the need for improved supportive care in patients with MM, ideally with a multidisciplinary approach. It also identifies the potential for further investigation of patient approaches to adjusting to MM and development of support strategies.
尽管多发性骨髓瘤（MM）无法治愈，但许多人仍能在疾病中存活数年。因此，了解疾病及其疗法对 MM 患者生活的影响非常重要。本定性研究探讨了 MM 及其治疗对患者的影响。
从一家三级医疗机构招募了新诊断或复发的 MM 患者。采用半结构化方法对参与者进行访谈。问题旨在深入了解参与者如何看待自己的诊断、治疗和症状，以及这些如何影响他们的生活。使用现象学方法对数据进行分析。
招募了 15 名平均年龄为 62 岁的 MM 患者。参与者的平均诊断后时间为 2.7 年，平均接受了 1.7 线治疗。首先出现的主要主题是生活方式的改变。受访者描述 MM 导致他们生活的各个方面发生变化，包括功能的实质性变化，以及就业、人际关系和自我认知的变化。第二个主要主题是“调整，调整，再调整”。除了生活的挑战变化，参与者还描述了一系列实用、心理和关系方面的方法，以适应 MM 的生活。
本研究强调了在 MM 患者中提供和改善支持性护理的重要性，理想情况下采用多学科方法。它还确定了进一步研究患者适应 MM 的方法和开发支持策略的潜力。
