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Daniel C. McFarland, Heather Polizzi, John Mascarenhas, Marina Kremyanskaya, Jimmie Holland, and Ronald Hoffman

Background: BCR-ABL–negative myeloproliferative neoplasms (MPNs) represent a heterogeneous group of diseases, including essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF). Psychological manifestations among these diseases have not been adequately described. Methods: Cross-sectional surveys measuring distress, anxiety, and depression were collected from patients with BCR-ABL–negative MPNs from May 2015 to October 2015. Participants provided demographic information and completed the Distress Thermometer and Problem List (DT&PL) to assess distress and the Hospital Anxiety and Depression Scale (HADS) to assess distress, anxiety, and depression. They provided information on how their MPN affected their lives. Results: Of the 117 participants, 31.2% had PV, 28.4% had ET, 28.4% had MF, and 11.9% had another type of MPN. Time with MPN varied from less than 1 year (7.5%), 1 to 3 years (19.8%), 3 to 5 years (23.6%), 5 to 10 years (19.8%), and more than 10 years (29.2%). Distress averaged 3.14 (SD, 2.83; DT&PL), with 40.4% meeting NCCN criteria for distress, and averaged 8.97 (SD, 7.44; HADS), with 38.5% meeting HADS criteria for distress. Anxiety averaged 5.54 (SD, 4.37), with 31.3% meeting HADS criteria for anxiety. Depression averaged 3.4 (SD, 3.4), with 12.5% meeting HADS criteria for depression. Distress was higher for PV (3.86), MF (3.12), and “other” MPN (4.33) than it was for ET (1.81; P=.016). Distress was more common in non-white patients (P=.015) and those with either PV or MF but not ET (DT&PL ≥4; P=.038). Patients' comments described coping strategies or symptom burden. Conclusions: Distress and anxiety are highly prevalent with BCR-ABL–negative MPNs and may correspond to disease-related symptom burden. These findings deserve further study.

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Daniel C. McFarland, Kelly M. Shaffer, Heather Polizzi, John Mascarenhas, Marina Kremyanskaya, Jimmie Holland, and Ronald Hoffman

Background: Patients with myeloproliferative neoplasms (MPNs) can have a severe physical symptom burden over an extended disease trajectory that contributes to decreased quality of life. Few studies, however, have characterized which patients most frequently consider physical symptoms a problem. This study describes the physical symptoms of patients with MPNs and the relationship of these symptoms to patient characteristics. Methods: Patients with MPNs (N=117) completed questionnaires in a dedicated academic medical center MPN clinic. Patients reported demographics (age, race/ethnicity, sex, marital status, employment status), disease characteristics (MPN type, time with MPN), and whether they were bothered by any of 22 variables in the “Physical Problems” list in the Distress Thermometer and Problem List (DT&PL). Results: The median number of physical problems endorsed by patients was 2 (median, 2.26; SD, 3.18), with a range from 0 to 20. Two-fifths endorsed no physical problems, one-fifth endorsed 1 problem, and two-fifths endorsed ≥2 problems, with fatigue (35.5%), sleep (27.1%), pain (21.5%), dry skin/pruritus (18.7%), and memory/concentration (16.8%) being the most commonly reported. Non-Caucasian participants reported more problems with sleep (P=.050), pain (P=.016), and tingling (P=.026). Patients with polycythemia vera (PV) reported more issues with tingling (P=.046) and sexual problems (P=.032). Conclusions: Patients with MPNs are more likely to report physical symptom bother than to report no bother with multiple physical problems on the DT&PL. Patients of minority race/ethnicity and those with PV, however, showed heightened prevalence of physical problems—characteristics which may be used to triage patients for more intensive symptom management.