Impact of Myeloproliferative Neoplasms (MPNs) on Patient Employment and Income: Findings From the Living with MPNs Survey

Abstract

Background The objective of this analysis was to evaluate income loss resulting from disease-related employment changes among patients with myeloproliferative neoplasms (MPNs). Methods Patients aged 18 to 70 years diagnosed with an MPN were eligible to participate in the online Living with MPNs survey (April–November, 2016). Respondents employed at the time of diagnosis were asked questions about changes in employment status related to their MPN and their salaries before and after those changes. Cumulative income loss resulting from disease-related employment changes up to the time of the survey was calculated based on the timing of changes in employment and salary, which was reported in inflation-adjusted 2018 US dollars. Results Among 904 patients with an MPN who responded to the survey, 299 were employed at the time of MPN diagnosis and reported ≥1 disease-related employment change. For nearly half (144/299 [48.2%]) of employed patients who reported a change in employment status, the first change occurred within 1 year of diagnosis, and most (229/299 [76.6%]) had ≥1 change within 2 years. Employment status changes and the associated impact on income were greatest among patients who took early retirement ($517,866 lost income), followed by those who took medical disability leave ($289,910) or left a job because of their disease ($257,178). Conclusions Disease-related employment changes contributed to considerable income loss among patients with MPNs. Similar to other chronic conditions, potential exists for disease-related employment changes and income loss among patients with MPNs that should be considered during disease management.