According to a recent international patient survey, patients who have myeloproliferative disorders have a high symptom burden that affects their emotional status, quality of life and functional ability.
The survey showed that 90 percent of patients reported one or more symptoms within the past 12 months, the most common symptom being fatigue/tiredness. A substantial proportion of patients with myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia (ET) reported multiple troubling symptoms, which often were rated as 6 or higher on a severity scale of 0-10.
A dozen types of symptoms affected a fourth or more of the 699 survey participants, Claire N. Harrison, D.M., deputy clinical director of cancer and hematology at Guy’s and St. Thomas’ Hospital in London, reported at the American Society of Hematology meeting in San Diego.
“The findings from this international survey indicate that many patients with myeloproliferative neoplasms (MPNs) experience a high disease burden, including a high prevalence of symptoms and reduction in emotional wellbeing, quality of life, activities of daily living, and ability to work,” Harrison and colleagues concluded in a poster presentation.
“When patients with myeloproliferative neoplasms are treated, care should be taken in trying to manage patient disease burden to minimize the impact on patients’ daily lives.”
The findings came from the global MPN LANDMARK survey, conducted in Australia, Canada, Germany, Italy, Japan and the United Kingdom. Patients in those countries completed comprehensive surveys designed to assess the impact of MPNs on symptoms, quality of life, and normal activities.
This global survey involved 174 patients with MF, 223 with PV, and 302 with ET. Geographic distribution consisted of 10 patients from Australia, 64 from Canada, 149 from Germany, 106 from Italy, 84 from Japan and 286 from the UK. Patients were recruited by clinical practices and patient support groups.
The survey consisted of 63 questions, some of which had multiple items. Patients completed the questionnaire online, and the survey required 25 to 30 minutes to complete. Physicians completed a companion survey, results of which will be reported at a later date, according to Harrison.
Fatigue or tiredness was the single most common symptom, reported by 64 percent, 54 percent, and 45 percent of patients with ET, MF, and PV, respectively. The types of symptoms and symptom burden varied by MPN type:
- MF—Abdominal discomfort (30 percent), shortness of breath (29 percent), night sweats (29 percent) and difficulty sleeping (27 percent)
- PV—Pruritus (28 percent), loss of concentration (27 percent), night sweats (25 percent) and dizziness (25 percent)
- ET—Dizziness (33 percent), night sweats (31 percent), bruising (30 percent) and difficulty sleeping (28 percent)
Similarly, fatigue ranked at the top of the list of “most severe symptoms” for patients with all three types of MPNs. The mean severity scores for fatigue (scale of 0-10) were 6.68 for MF, 6.53 for PV, and 6.44 for ET. “Inactivity” followed, with mean scores of 6.7 for MF, 5.97 for ET and 5.54 for PV. Patients with ET had a mean severity score of 7.89 for “other symptoms not listed” and 6.92 for blood clots.
Overall, more than 25 different symptoms had mean severity scores exceeding 5.
Asked whether MPN symptoms affected quality of life, three-fourths of the patients agreed strongly (29 percent) or somewhat (47 percent). The proportion of agreement was similar across the 3 types of MPN.
A fourth of all the patients said their disease frequently caused emotional hardship, and 29 percent said they frequently felt anxious or worried.
An 8-item assessment of MPNs’ effect on quality of life showed generally similar responses across patients with the 3 types of conditions. A test for statistical significance showed that patients with MF had higher mean scores for feeling anxious or worried, physical hardship, and emotional hardship.
About half (48 percent) of the patients said they frequently felt satisfied with their ability to cope with their disease. Harrison and colleagues found that 33 percent, 24 percent and 23 percent of patients with MF, PV and ET, respectively, said their condition caused emotional hardship. Additionally, 34 percent, 29 percent and 26 percent of patients with MF, PV and ET reported feeling anxious or worried about their disease.
Twenty-seven percent of patients felt their condition had a high impact on them or their caregivers. Other evidence of interference with activities of daily living included pain-limiting activities (24 percent), interference with family or social life (26 percent) and interference with daily activities (26 percent). Two-thirds of patients with PV or ET reported never needing a caregiver, as compared with 42 percent of patients with MF.
The survey also revealed that 20 percent of patients had to reduce hours at work because of their disease. Overall, almost 7 percent reported increased absenteeism from work because of MPNs, 31 percent worked while sick and 35 percent felt their condition impaired their ability to work. Employed patients with MF reported missing an average of 4.8 hours from work the previous seven days, followed by 3.3 hours among patients with PV, and 2.6 hours among those with ET.
Finally, 37.8 percent, 35.5 percent, and 33.4 percent of patients with MF, PV, and ET, respectively, reported work impairment as a result of their condition. Additionally, 44.9 percent, 39.9 percent, and 38.1 percent of patients with MF, PV, and ET reported impairment in their overall activity.
The researchers noted that additional analyses of clinician–patient interaction, differences by country, and treatment patterns are planned, they added.