Impact on Caregivers of Patients (Pts) with Myeloproliferative Neoplasms (MPNs) in the United States: Results from the Living with MPNs (LWMPN) Survey

Background: The MPNs myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia (ET) are associated with a variety of burdensome symptoms (BMC Cancer. 2016;16:167) and reduced survival compared with the general population (PLOS One. 2014;9:e90299). Although some information exists regarding the financial impact of common cancers on family members (J Health Econ. 2017;52:1-18), limited data are available about the burden MPNs place on caregivers, and how navigators may be able to help alleviate that burden.

Objective: To evaluate the caregiver burden associated with MPNs.

Methods: The LWMPN survey was administered online April-November 2016 to US pts with MPNs aged 18 to 70 years. The 10-item MPN Symptom Assessment Form Total Symptom Score (MPN-SAF TSS) was used as a cancer distress screening tool to assess symptom burden within the prior 7 days (range, 0-100; higher scores indicate greater burden). Pt-reported need for caregiver assistance was also described.

Results: 904 pts with MPNs were surveyed (MF, n = 270; PV, n = 393; ET, n = 241), of whom 498 (55.1%; rarely, n = 169; sometimes, n = 210; often, n = 119) reported ever receiving help from a caregiver. Mean age and disease duration for pts with a caregiver were 54.4 years and 5.4 years, respectively. Pts with a caregiver reported more comorbid conditions (52.4% vs 38.4%), a higher mean MPN-SAF TSS (40.9 vs 20.0), and received a mean (SD) of 14.1 (22.3) hours of assistance over 7 days. The most common caregivers were spouses/partners (68.1%), sons/daughters (10.6%), and parents (6.2%). The most common types of caregiver assistance were homemaking (77.7%), companionship (57.4%), and transportation (55.2%). Most caregivers were employed (76.9%); 26.3% of whom had reduced work hours, 7.4% terminated a job, and 6.6% took early retirement to care for a pt with an MPN.

Conclusion: Most pts who participated in the LWMPN survey reported receiving assistance from a caregiver due to their MPNs. Mean symptom burden was twice as high among pts who had a caregiver vs pts who did not. Approximately one-fourth of caregivers required employment adjustments (eg, reduced work hours, terminated job, early retirement). These results underscore the importance of support services needed for both pts with MPNs and their caregivers, such as resources/information about professional caregiving services, the Family Medical Leave Act, transportation alternatives, mitigation of financial strains, or unique local resources that navigators may be able to provide.

Disclosure: This work was funded by Incyte Corporation.