Department of Health Services and Implementation Research | Department of Nursing | Department of Clinical Hematology, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia.
Department of Clinical Pathology | The Sir Peter MacCallum Department of Oncology, The University of Melbourne, Melbourne, Victoria, Australia.
Cancer Rep (Hoboken). 2023 Jan;6(1):e1655. doi: 10.1002/cnr2.1655. Epub 2022 Jun 15.
Myeloproliferative neoplasms (MPNs) are rare haematological cancers. Several studies report the most common MPN symptom leading to reduced quality of life is fatigue. Yet, how fatigue affects the lives of people with MPN is not well described.
The purpose of this qualitative study is to better understand the lived experience of fatigue associated with MPN.
People with MPN who had experienced fatigue were invited to complete an online survey and if eligible, then to participate in semi-structured interviews and focus groups, exploring their experiences of fatigue. Thematic analysis of interview transcripts by two researchers produced themes describing the lived experience of fatigue. Twenty-three people with MPN participated in seven interviews and four focus groups. Qualitative data revealed how fatigue significantly affected participants' experiences of functional, social, family and emotional wellbeing. Participants reported that fatigue was infrequently acknowledged or addressed by health professionals, and a lack of information or support to manage their fatigue. Four themes including 12 sub-themes describe the experience of fatigue in MPN: (1) the distress of the MPN diagnosis, (2) sensations of fatigue, (3) daily life and emotional burden with fatigue and (4) how people managed their fatigue with limited guidance.
Fatigue in MPN is common, debilitating and distressing. It affects all aspects of health, wellbeing and life. Health professionals could affect patients' lives substantially by acknowledging and understanding fatigue in MPN, including contributing factors and potential opportunities for management. More systematic data describing the causes and management of MPN fatigue is needed.
骨髓增殖性肿瘤（MPN）是罕见的血液系统癌症。有几项研究报告称，导致生活质量下降的最常见 MPN 症状是疲劳。然而，MPN 患者的疲劳感如何影响他们的生活并没有得到很好的描述。
本定性研究的目的是更好地了解与 MPN 相关的疲劳的生活体验。
邀请经历过疲劳的 MPN 患者完成在线调查，如果符合条件，然后参加半结构式访谈和焦点小组，探讨他们的疲劳体验。两位研究人员对访谈记录进行主题分析，得出描述疲劳生活体验的主题。23 名 MPN 患者参加了 7 次访谈和 4 次焦点小组。定性数据揭示了疲劳如何显著影响参与者的功能、社会、家庭和情感健康体验。参与者报告说，疲劳很少得到卫生保健专业人员的承认或处理，缺乏信息或支持来管理他们的疲劳。四个主题包括 12 个子主题描述了 MPN 中的疲劳体验：(1) MPN 诊断的困扰，(2)疲劳的感觉，(3)疲劳对日常生活和情绪的负担，(4)人们在有限的指导下如何管理他们的疲劳。
MPN 中的疲劳很常见，使人虚弱和痛苦。它影响健康、幸福和生活的各个方面。卫生保健专业人员通过承认和理解 MPN 中的疲劳，包括其促成因素和潜在的管理机会，可能会对患者的生活产生重大影响。需要更系统地描述 MPN 疲劳的原因和管理方法。
