The impact of myeloproliferative neoplasms (MPNs) on patient quality of life and productivity: results from the international MPN Landmark survey

Abstract

Myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia (ET) are myeloproliferative neoplasms (MPNs) associated with high disease burden, reduced quality of life (QOL), and shortened survival. To assess how MPNs affect patients, we conducted a global MPN Landmark survey. This online survey of patients with MPNs and physicians was conducted in Australia, Canada, Germany, Japan, Italy, and the United Kingdom. The survey measured MPN-related symptoms and the impact of MPNs on QOL and the ability to work as well as disease-management strategies. Overall, 219 physicians and 699 patients (MF, n = 174; PV, n = 223; ET, n = 302) completed the survey; 90% of patients experienced MPN-related symptoms. The most frequent and severe symptom was fatigue. Most patients experienced a reduction in QOL, including those with low symptom burden or low-risk scores. A substantial proportion of patients reported impairment at work and in overall activity. Interestingly, physician feedback and blood counts were the most important indicators of treatment success among patients, with improvements in symptoms and QOL being less important. Regarding disease management, our study revealed a lack of alignment between physician and patient perceptions relating to communication and disease management, with patients often having different treatment goals than physicians. Overall, our study suggested that therapies that reduce symptom burden and improve QOL in patients with MPNs are crucial in minimizing disease impact on patient daily lives. Additionally, our findings showed a need for improved patient-physician communication, standardized monitoring of symptoms, and agreement on treatment goals.

Keywords: (4–6): MPN; Activities of daily living; Quality of life; Symptom burden; Work productivity.

Fig. 1

Symptoms experienced by patients in past 12 months. Top 10 symptoms for each disease are reported. ET essential thrombocythemia, MF myelofibrosis, PV polycythemia vera

Fig. 2

Symptoms reported as > 6 (for any disease) on a severity scale of 0 (not severe at all) to 10 (worst imaginable). Scores for which n < 20 are not presented. ET essential thrombocythemia, MF myelofibrosis PV polycythemia vera

Fig. 3

Patient impact ratings against select statements about disease impact on QOL. Patients were asked to “Rate the following statements as they have occurred during the past month, as a result of your condition.” Statements were ranked from 1 (not at all) to 5 (a great deal). For the purpose of this analysis, 1 = never, 2–3 = sometimes, and 4–5 = frequently. QOL quality of life

Fig. 4

Patient impact ratings of select statements about disease impact on daily activities. Patients were asked “To what extent does your condition interfere with the following activities in your life?” Statements were ranked from 1 (not at all) to 5 (a great deal). For the purpose of this analysis, 1 = no impact, 2–3 = some impact, and 4–5 = high impact

Fig. 5

Most important treatment goals in a MF, b PV, and c ET as reported by patients and physicians. Patients were asked, “Other than a cure for your condition, what are your 3 most important treatment goals? Please assign rankings (1-3), with 1 being the most important.” Physicians were asked, “Other than a cure, what is your most important treatment goal for therapy for each disease? Starting with 1 as the most important, 2 as the second, and 3 as the third, please write 1, 2, and 3 for each disease.” The figure shows the proportion of patients and physicians who selected the “goal” within their top 3