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

Dilan Paranagama

doi:10.23937/2469-5823/1510108

International Archives of

Citation

Paranagama D, Parasuraman S, Yu J, Lyle L, Mesa R (2018) Impact on Caregivers of Patients with Myeloproliferative Neoplasms (MPNs) in the United States: Results from the Living with MPNs Survey. Int Arch Nurs Health Care 4:108. doi.org/10.23937/2469-5823/15100108

Copyright

© 2018 Paranagama D, et al.This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

ORIGINAL ARTICLE | OPEN ACCESS DOI: 10.23937/2469-5823/1510108

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

Dilan Paranagama^1*, Shreekant Parasuraman¹, Jingbo Yu¹, Lindsey Lyle² and Ruben Mesa³

¹Incyte Corporation, Wilmington, DE, USA

²University of Colorado Anschutz Medical Campus, Aurora, CO, USA

³San Antonio Cancer Center - An NCI Designated Cancer Center, San Antonio, TX, USA

Abstract

Background

To describe the impact of myeloproliferative neoplasms (MPNs) on caregivers.

Methods

904 patients with MPNs aged 18-70 years in the US who completed the online Living with MPNs survey between April and November, 2016. The MPN Symptom Assessment Form Total Symptom Score was used to describe symptom burden. Patient-reported need for caregiver assistance and caregivers' employment change due to MPNs was reported.

Results

55.1% of patients reported receiving caregiver assistance. Caregivers were predominantly family members (spouses/partners [68.1%], sons/daughters [10.6%], parents [6.2%]) and most commonly provided assistance with homemaking (77.7%), companionship (57.4%), and transportation (55.2%). Most caregivers were employed (76.9%), of whom 26.3% reduced work hours, 7.4% terminated a job, and 6.6% retired early to care for a patient with an MPN. Patients who received caregiver assistance reported a higher mean MPN-SAF total symptom score (40.9 vs. 20.0) and had more comorbid conditions (52.4% vs. 38.4%) than patients not receiving caregiver assistance.

Conclusion

Most survey respondents to this US survey reported receiving MPN-related caregiver assistance. A higher symptom burden was reported by those receiving assistance than those who did not. Approximately one-fourth of caregivers underwent employment adjustments. There may be a need for support services for patients with MPNs and their caregivers.