Most patients with a myeloproliferative neoplasm (MPN) were unaware of the cause even though they had symptoms one year before a formal diagnosis, a survey showed. To enhance patient awareness, physicians need to standardize evaluations on symptoms, it said.
MPN is a set of rare blood cancers in which a person’s bone marrow malfunctions. The most prevalent MPNs are myelofibrosis (MF), polycythemia vera (PV) and essential thrombocythemia (ET).
Researchers released the so-called LANDMARK Survey on MPN patients and physicians in five countries, including Korea, at the European Hematology Association’s 24th congress in Amsterdam, the Netherlands, on June 14.
The survey polled 506 patients from Korea, China, Turkey, Russia, and Taiwan (147 with MF, 168 with PV, and 191 with ET), and 240 physicians (hematologists 68 percent, hematologic oncologists, 32 percent). It reported symptoms of MPN, treatment goals, and awareness on the disease management.
The poll showed that patients were not aware that the symptoms were due to the disease even when they were already experiencing symptoms. It lowered their quality of life and increased psychological burden.
Eighty-three percent of the patients experienced MPN symptoms at least for a year before receiving a diagnosis, and most of them did not know the cause.
Fatigue was the most common symptom that patients reported to physicians (MF 69 percent, PV 40 percent, and ET 54 percent) but only some of them (MF 18 percent, PV 25 percent, and ET 18 percent) were aware that the symptom came from MPN.
Most of the physicians (94 percent) and patients (82 percent) felt that MPN diminished the patients’ quality of life, and 83 percent of physicians reported that a light symptom could negatively affect the patient’s quality of life.
Eighty-two percent of patient respondents said MPN symptoms lowered their quality of life and over half of the patients (MF 78 percent, PV 59 percent, and ET 57 percent) were anxious about their health status. Among MF patients, in particular, the burden for activities of daily living was high.
The results of the survey signaled that there was room for improvement in communication between patients and physicians in setting an MPN treatment goal.
While physicians picked “better quality of life of the patient” as the most important goal for therapy, patients put top priority in “MPN symptom reduction.”
Only 28 percent of physicians felt that their treatment goal and that of patients matched. Among patients, 25 percent were not satisfied with the doctor’s understanding and support for the therapy goal and felt that their symptoms worsened more often than the doctors’ recognition.
However, about half of the patients were highly satisfied with the physicians’ MPN management and treatment.
“The results of the survey show that patients' understanding of MPN symptoms is poor and that standardization of symptom evaluation is needed to improve patients’ understanding of MPN,” researchers said. “Despite the satisfaction of patients on disease management, the survey proved that communication between patients and physicians needs improvement.”
Bang Soo-mee, a professor at Hemato-Oncology Department at Seoul National University Bundang Hospital, who participated in the survey, said the study confirmed that patients with PV, which used to be taken lightly among MPN, had psychological burden due to symptoms.
“We need more active monitoring on symptoms when caring for PV patients,” she said.