Patient-Reported Outcomes in Young Adults with Myeloproliferative Neoplasms

Abstract

Introduction Genetic landscape, disease characteristics and clinical outcomes of young adults with myeloproliferative neoplasms (MPNs) were reported. However, data on patient-reported outcomes (PROs) in young adults with MPNs were rare. Methods We conducted a multicenter, cross-sectional study to compared the PROs in respondents with thrombocythemia (ET), polycythemia vera (PV) and myelofibrosis (MF) by age at survey, including the young group (18-40 years), middle-aged group (41-60 years), and elderly group (> 60 years). Results Of the 1664 respondents with MPNs, 349 (21.0%) were young including 244 (69.9%) with ET, 34 (9.7%) with PV and 71 (20.3%) with MF. In multivariate analyses the young groups with ET and MF were associated with the lowest MPN-10 scores among the 3 age groups; those with MF, highest proportion of reporting negative impact of disease and therapy on their daily life and work. The young groups with MPNs had the highest physical component summary scores, but the lowest mental component summary scores in those with ET. The young groups with MPNs were most concerned about fertility; those with ET, treatment-related adverse events and long-term efficacy of treatment. Conclusions We concluded that young adults with MPNs have different PROs compared with middle-aged and elderly patients.

Myeloproliferative neoplasms in the adolescent and young adult population: A comprehensive review of the literature

“…They also reported more concerns with fertility, drug advances/prices, and treatment efficacy and adverse effects. As part of the short‐form health survey, AYA patients reported the lowest mental health score out of all age groups 124 . These results suggest that young patients with MPN experience disease burden that may differ from older patients.…”

“…As part of the short-form health survey, AYA patients reported the lowest mental health score out of all age groups. 124 These results suggest that young patients with MPN experience disease burden that may differ from older patients. Management of MPNs should prioritize patient's concerns when possible, which may encompass modification of activities of daily living in order to promote optimal work-life balance.…”

Childbirth rates in women with myeloproliferative neoplasms

“…To our knowledge, this is the first population-based study addressing childbirth rate in women with MPN. Fertility and childbearing in women with cancer and chronic disease are important for quality of life [9,10,17]. There is a general trend in many developed societies of delaying childbirth in life; mean maternal age at childbirth in Sweden was 26.0 in 1973, and has gradually increased to 30.5 years in 2018, [18] suggesting that a larger group of women will receive a diagnosis of MPN prior to having completed their family plans.…”

“…To our knowledge there is no study that systematically describes reproductive patterns. The ability to bear children, and to have adequate information to make well-informed decisions regarding reproductive health is of major importance for quality of life in patients with chronic malignant diseases [ 9 , 10 ]. In the current population-based study we compared women with MPN to age-matched controls, and describe childbirth patterns and quantify childbirth rates.…”