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

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

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.

Background
Myeloproliferative neoplasms (MPNs), including myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia (ET), are chronic hematologic malignancies that are associated with reduced survival compared with the age-and sex-matched general population [1,2]. Patients with an MPN are at heightened risk for thrombosis and transformation to acute myeloid leukemia [3,4]. In addition, they may experience a broad range of symptoms [5,6] that compromise daily functioning and quality of life [5][6][7]. In the MPN Landmark survey of patients in the United States, fatigue was the most commonly reported symptom in all 3 MPN subtypes (MF, 80%; PV, 73%; ET, 71%) [5]. Abdominal pain and night sweats were experienced by approximately half of patients with MF (53% and 51%, respectively) and were also common in PV (35% and 45%) and ET (31% and 38%) [5]. Other common symptoms (>20% of patients for each MPN) included bone pain, pruritus, early satiety, and concentration problems [5].
In addition to symptom-related reduction in quality of life [5][6][7], patients with an MPN also experience work impairments and decreased productivity [5,7,8]. In the Living with MPNs survey, a cross-sectional online survey of patients with an MPN living in the United States, approximately half (50.5%) of employed respondents reported ≥1 change in employment status related to their diagnosis [8]. The most commonly cited changes in work status included "left a job" (30.2%), "went on medical disability" (24.8%), and "had reductions in work hours for ≥3 months" (21.8%) [8]. More than half of respondents (54.4%) also reported limitations to their career opportunities due to their diagnosis [8].

Study Design and Patients
The Living with MPNs survey was a cross-sectional online questionnaire administered between April and November 2016 [8].

Survey Instruments
Details of the Living with MPNs survey have been previously described [8,16,17].
In brief, the questionnaire consisted of approximately 100 questions related to MPN diagnosis; disease-related history; changes since diagnosis in employment status, work productivity, and daily activities; MPN-related symptoms; and functional status. Respondents who were employed at the time of MPN diagnosis were asked an additional set of questions about disease-related changes in employment status and salary income before and after those employment changes. The survey was designed to take approximately 30 minutes to complete.  Table 1).

Characteristics of Employed Respondents
The Living with MPNs survey included 904 respondents, 592 (65%) of whom were employed at the time of MPN diagnosis. Detailed patient demographics and disease characteristics among employed respondents of the Living with MPNs survey have been described previously [8]. Briefly, 174 (29.4%), 248 (41.9%), and 170 (28.7%) employed respondents were diagnosed with MF, PV, and ET, respectively. The mean age of respondents employed at diagnosis was 54.0 years, 70.6% were female, 72.3% were married or had domestic partners, and most (81.3%) were employed full-time at diagnosis ( Table 2). The average time from MPN diagnosis to survey administration was 6.1 years (MF, 4.6; PV, 6.9; ET, 6.3).

Changes in Employment Status
Two-hundred ninety-nine of 592 employed respondents (50.5%) reported ≥1 change in employment due to their diagnosis, with 34.5% (204/592) of respondents reporting ≥2 employment changes since diagnosis and 21.5% (127/592) reporting ≥3 changes ( Table 3) Table 4). The mean duration of employment change was approximately 3 years, and patients who took early retirement did so a mean of 8.5 years ahead of schedule ( Table 5).
<<Insert Table 3 here>>   <<Insert Table 4 here>>   <<Insert Table 5 here>>  Respondents aged 45 to 64 years were more likely to take early retirement or leave a job compared with the general US population. Employment status changes and the associated losses in income were greatest among patients who took early retirement, followed by those who went on medical disability leave or left a job owing to their disease.

Impact of Changes in Employment Status on Income
Findings from this study suggest that patients with an MPN face significant financial hardships as a result of their disease and support previous patient-reported data. In the US MPN Landmark survey, many employed respondents reported lost productivity from reduced work hours (30%-59%), calling in sick to work (19%-29% with ≥1 sick day in the preceding 30 days), terminating their job (voluntarily, 11%-31%; involuntarily, 4%-5%), taking medical disability (7%-28%), or early retirement (14%-30%) [5]. The impact of symptom burden on overall health and productivity was also assessed in the US MPN Landmark survey. Patients with MF had the highest mean MPN Symptom Assessment Form total symptom score (MPN-SAF TSS; 21.2 vs 17.4 for PV and 14.8 for ET) and were more likely to report that their MPN symptoms interfered with daily activities "a great deal" (21%) compared with patients with PV (10%) or ET (7%) [5]. In agreement with these findings, respondents in the Living        Methods -formula.docx