Relationship between symptom burden and disability leave among patients with myeloproliferative neoplasms (MPNs): findings from the Living with MPN patient survey

Abstract

Patients with myeloproliferative neoplasms (MPNs) experience burdensome symptoms that negatively affect their quality of life. How MPN symptoms relate with medical disability leave (MDL) among patients with the disease has not been previously examined. Using data collected from the Living with MPNs patient survey, symptom burden and functional status were compared in patients who reported taking MDL due to their MPN versus patients who reported no changes in employment status. Among 592 patients who were employed full- or part-time at diagnosis, 24.8% reported taking ≥ 1 MDL and 49.4% reported no change in employment status as a result of their MPN. Of the patients who took MDL, 29.9% took ≥ 2 MDLs, and most patients (62.6%) did not return to work. All 10 symptoms comprising the MPN Symptom Assessment Form were significantly more frequent and severe in patients who took MDL compared with those who had no employment change. Furthermore, functional impairments were also significantly more frequent among patients who went on MDL versus those with no employment change. Effective management of MPN-related symptoms may reduce disability leave among patients with high symptom burden.

The Myeloproliferative Neoplasm Landscape: A Patient’s Eye View

“…The findings from the Landmark study are echoed in other surveys of PROs in MPN [6,[8][9][10]. In a study conducted in the UK and USA, significant reductions in QoL relative to controls were observed, as well as differences in QoL between UK and US patients, and in symptom burden between male and female patients [6].…”

“…The US ''Living with MPNs'' survey found that all three types of MPNs have a substantial negative impact on patients' employment status, career potential, and work productivity comparable to the impairment levels reported for other disabling chronic conditions [9,10]. While patients with MF and those with higher symptom burden reported the greatest impact, a notable proportion of patients with PV and ET and lower symptom burden were also severely impacted by their symptoms and corresponding impairments associated with their disease [9,10].…”

“…The wide-ranging nature and degree of the impact of MPNs has been highlighted in an increasing number of studies over recent years [3,[6][7][8][9][10][11][12]. One of the largest studies was the international MPN Landmark survey, conducted from April 2016 to October 2016, which included data from over 800 patients with MPN and over 450 physicians across the USA, and almost 700 patients with MPN and over 200 physicians across Australia, Canada, Germany, Italy, Japan, and the UK [3,7].…”

“…The overall burden of disease associated with MPNs has a significant negative impact on patients’ lives. Recent studies have shown that MPNs result in marked impairment of quality of life (QoL), work productivity, everyday life, and relationships [ 3 , 6 – 10 ], and they are associated with significant emotional issues, including depression and anxiety [ 11 , 12 ]. While the impact is generally greatest in patients with MF, and in higher-risk patients or those with greater symptom burden, negative effects are seen across the disease spectrum [ 3 , 6 , 7 , 9 ].…”

Recruitment strategies and geographic representativeness for patient survey studies in rare diseases: Experience from the living with myeloproliferative neoplasms patient survey

“…The Living with MPNs survey was a cross-sectional web-based questionnaire that has been previously described [ 13 , 15 ]. In brief, individuals 18 to 70 years of age with a diagnosis of MF, PV, or ET and living in the United States were eligible to participate.…”