Fatigue is a very real and significant problem for people with myeloproliferative neoplasms (MPNs). These patients often struggle to cope due to lack of knowledge about their condition and professional support. Yet, there is a dearth of research into MPN-specific experiences that might guide establishment of interventions.
With the goal of learning more about the lived experience of people with MPN, a group of researchers conducted a qualitative study. They recruited 23 people with MPN in Australia to participate in 7 interviews and 4 focus groups as part of the study. Their findings were published in Cancer Reports.
Research has already established that fatigue affects approximately 95% of people with MPN, and the specific impact of that fatigue can vary. The researchers identified 4 qualitative themes that illustrate the challenges patients with MPN face and the complex qualities and life-changing impact of fatigue. The 4 themes were:
- Life with an MPN: How the diagnosis changes the patient’s life.
- “It’s not being tired, it’s completely different. It’s fatigue”: Explanation of the qualities of MPN fatigue.
- “It changes your life completely”: The profound impact of fatigue on patients’ lives and identities.
- “Living the best life I can”: Descriptions of patients’ struggles to manage their lives with MPN-related fatigue
The researchers report that their findings resemble those of other studies that gauged cancer-related fatigue. For example, patients in those studies also experienced anxiety and changes to their self-identity as a result of their fatigue. They described their fatigue as being very different from “normal tiredness.”
“Our qualitative findings align with previously reported associations between fatigue severity in MPN and symptom burden and inversely with self-reported exercise,” the researchers reported. “Together, these point to use of established guidelines for cancer fatigue for fatigue in MPN, including symptom management, physical activity, and cognitive approaches.”
The researchers noted that all the participants were members of online MPN support groups and had low to moderate distress scores, so patients experiencing severe distress might have added some diversity to the responses.
Some people are more likely to gravitate to virtual focus groups and interviews, as deployed in this study, which may have influenced the results. For example, participants in this study were younger than the general population of MPN patients. The researchers suggest future research focus on recruiting patients with different demographic characteristics.
Clinicians should always acknowledge and address the fatigue experienced by patients with MPN to help them achieve the best possible quality of life. Until MPN-specific fatigue guidelines can be established, clinicians should use guidelines for cancer-related fatigue to help patients reduce their symptom burden.
Bradford A, Young K, Whitechurch A, Burbury K, Pearson EJM. Disabled, invisible, and dismissed — the lived experience of fatigue in people with myeloproliferative neoplasms. Cancer Rep (Hoboken). Published online June 15, 2022. doi:10.1002/cnr2.1655.