As a clinician, you know certain questions are bound to come up after you inform a patient that they have a myeloproliferative neoplasm (MPN). For example:
- Is my condition curable?
- What are my treatment options?
- Are MPNs genetic?
- What’s my short- and long-term prognosis?
Perhaps most pressing, however, for some patients is “how will my MPN affect my quality of life (QoL)?” Specifically, they may want to know how their condition will affect their day-to-day routine and which measures they can take to mitigate potential burdens.
The Effects of MPNs on QoL
In recent years, several studies have investigated the impact of MPNs on patients’ quality of life. Among them:
- A 2012 study in Leukemia & Lymphoma, which examined a Swedish cohort of 114 patients.1
- A 2017 study in Annals of Hematology, a cross-sectional survey of 699 patients in six countries.2
- A 2019 study in Leukemia & Lymphoma, an analysis of the extent to which individual symptoms impact overall QoL in MPN subgroups.3
In the first study, the researchers found the symptomatic burden among the cohort was severe. Fatigue was reported in nearly 9 in 10 patients, as well as a reduced quality of life in most patients. Older patients experienced greater fatigue, problems with concentration, insomnia, and weight loss, among other issues.
In the second study, the researchers likewise found patients with MPNs experienced a high disease burden. The patients had a high prevalence of symptoms, with fatigue being among the most common and severe. They also experienced a reduction in emotional well-being, overall QoL, and ability to work. The investigators concluded that managing disease burden is essential to minimize disease impact on patients’ lives.
In the third study, the researchers found that, among 1416 patients with MPNs, mean symptom severity and prevalence were highly correlated. The symptoms that most impacted patients’ QoL were inactivity, fatigue, and depression.
Benefits of Support Groups
Support groups may offer a reprieve for patients with MPNs. Researchers have identified support groups as effective in bolstering patients’ QoL in other disease states such as breast cancer.4 These groups may offer patients several benefits, including:
- The ability to connect with others going through similar experiences
- Mutual support and a space to talk freely
- The feeling that they’re not alone
- Education and information about MPNs
- Coping strategies and practical advice
As a clinician, you may be able to help your patients by encouraging them to partake in these groups. You can point them toward various in-person and online groups, hotlines, community events, and other resources here.
1. Johansson P, Mesa R, Scherber R, Abelsson J, Samuelsson J, Birgegard G, Andreasson B. Association between quality of life and clinical parameters in patients with myeloproliferative neoplasms. https://pubmed.ncbi.nlm.nih.gov/21883029/. Leuk Lymphoma. 2012 Mar;53(3):441-4. doi: 10.3109/10428194.2011.619608. Epub 2011 Oct 24.
2. Harrison CN, Koschmieder S, Foltz L. The impact of myeloproliferative neoplasms (MPNs) on patient quality of life and productivity: results from the international MPN landmark survey. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5569657/. Ann Hematol. 2017; 96(10): 1653–1665.
3. Langlais BT, Geyer H, Scherber R, Mesa RA, Dueck AC. Quality of life and symptom burden among myeloproliferative neoplasm patients: do symptoms impact quality of life? https://pubmed.ncbi.nlm.nih.gov/30033837/. Leuk Lymphoma. 2019 Feb;60(2):402-408. doi: 10.1080/10428194.2018.1480768.Epub 2018 Jul 22.
4. Okwor V, Kwankwo K, Obidiebube P, et al. Impact of Support Group Intervention on Quality of Life of Patients With Advanced Breast Cancer. JCO Global Oncology. https://ascopubs.org/doi/abs/10.1200/jgo.18.70500. DOI: 10.1200/jgo.18.70500.