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Korean J Intern Med. 2022;37(2):444-454.

How myeloproliferative neoplasms patients' experience and expectations differ from physicians': the international MPN Landmark survey.

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제1저자 변자민 · 교신저자 최철원

소속 (7)
  1. Department of Internal Medicine, Seoul National University Hospital, Seoul, Korea.
  2. Department of Internal Medicine, Seoul National University Bundang Hospital, Seongnam, Korea.
  3. Department of Hematology, Asan Medical Center, University of Ulsan College of Medicine, Seoul, Korea.
  4. Department of Hematology, Catholic Hematology Hospital and Leukemia Research Center, Seoul St. Mary's Hospital, College of Medicine, The Catholic University of Korea, Seoul, Korea.
  5. Department of Medicine, Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, Korea.
  6. Novartis Korea Ltd., Seoul, Korea.
  7. Division of Hematology and Oncology, Department of Internal Medicine, Korea University Guro Hospital, Seoul, Korea.

Abstract

BACKGROUND/AIMS Recent advances in the understanding of the pathophysiology of myeloproliferative neoplasms (MPN) were not paralleled with advances in treatment options; thus many questions regarding optimal MPN management remain unanswered. Here, we report the results of descriptive survey study of Korean MPN patients and their attending physicians.

METHODS A total of 105 Korean patients (myelofibrosis [MF], 39; polycythemia vera [PV], 25; essential thrombocythemia [ET], 41) and 30 physicians completed the Landmark Health Survey, then data from the survey were analyzed.

RESULTS Among the MPN-Symptom Assessment Form symptoms, the most severe symptom reported was 'fatigue or tiredness' in MF and ET patients and 'itching' in PV patients. The majority of the patients agreed that MPN reduced their quality of life (QoL). Interestingly, physicians gave higher scores regarding the impact of MPN on patient's daily and social life compared to patients themselves. For patients, the most important treatment goal was symptom improvement regardless of MPN subtype, while for physicians the highest priority for treatment was better QoL regardless of MPN subtype. Generally, both patients and physicians were satisfied with the overall treatment/management of MPN and communications. However, many patients felt there was not enough time during the appointment for discussion, while many physicians felt they lacked effective drugs to offer to their patients.

CONCLUSION Our study suggests there are room for better-standardized monitoring of symptoms and treatment options and those continuous efforts to bridge the gap between patients and physicians are necessary for better care of MPN patients.

Keywords

Myeloproliferative disordersPatientsPhysiciansQuality of life

Figures

Figure 1
Figure 1 Most important treatment goals (A–E) and symptoms patients most like to resolve (F–H). Most important treatment goals (A) for myelofibrosis, (B) for polycythemia vera, (C) for essential thrombocythemia, (D) according to myeloproliferative neoplasm (MPN) risk score, (E) according to MPN symptom severity. Symptoms patients most like to resolve (F) for myelofibrosis, (G) for polycythemia vera, (H) for essential thrombocythemia.
Figure 2
Figure 2 Satisfaction regarding communication and treatment. (A) Overall treatment and management of myeloproliferative neoplasm, (B) patient-physician communications, (C) unmet medical needs from physicians’ point of view. MF, myelofibrosis; PV, polycythemia vera; ET, essential thrombocythemia.
Figure 3
Figure 3 Patients versus physicians on communications regarding treatment. (A) Doctor listens to patient’s concerns and address their questions. (B) Doctor asks patient about their symptoms at every appointment. (C) Doctor keeps patient informed about new treatment options. (D) Doctor involves patient in decisions about their treatment. (E) Doctor has created a treatment plan or goals for therapy for patients. (F) Doctor seems more interested in discussing blood counts. (G) There’s not enough time during the appointment to discuss all patient’s symptoms.

그림 출처: PubMed Central 공개 논문 (PMC8925951)

Conflict of interest statement

Jiwon Park is a medial liason at Novartis Korea, Seoul, South Korea. The authors thank Hyeseon Lee of Dream CIS Ltd. for providing medical writing support and editorial support for this manuscript, which was funded by Novartis Korea, Seoul, South Korea under Good Publication Practice (GPP3) guidelines ( http://www.ismpp.org/gpp3).

그 밖의 정보
출판 형태
Journal Article
저널
The Korean journal of internal medicine · eISSN 2005-6648
전자 출판
2022-02-28
MeSH
Humans · Motivation · Myeloproliferative Disorders* / diagnosis / therapy · Physicians* · Polycythemia Vera* · Primary Myelofibrosis* · Quality of Life
연구비
Novartis Korea
참고문헌
16편