日本医疗环境中血友病患者或其护理人员以及医生对治疗特点的偏好

IF 3 2区 医学 Q2 HEMATOLOGY
Haemophilia Pub Date : 2024-05-02 DOI:10.1111/hae.15028
Teruhisa Fujii, Masataka Ishimura, Satomi Takao, Ayumi Deguchi
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引用次数: 0

摘要

导言许多国家都对血友病患者的治疗偏好进行了研究。本研究首次对日本血友病患者(PWH)及其照护者以及医生的治疗特征偏好进行了研究。方法:邀请调查小组中的医生参与调查,并推荐血友病患者和照护者参与调查。通过网络调查了解了医生和患者/护理人员的背景、预防背景、预防目标、对血友病治疗产品的了解、重要信息来源、选择预防产品时的偏好、对患者病情的了解以及可能的产品转换。共有 107 名医生和 44 名患者/护理人员参与了调查。医生的主要治疗目标包括优化血友病管理。残疾人/护理人员则关注生活质量和减轻治疗负担。在处方治疗、选择预防产品的偏好、对患者病情的了解以及可能更换产品的原因方面,我们观察到 HTC 和非 HTC 的血友病治疗策略存在一致的差异。调整 HTC 和非 HTC 的治疗方法有助于提高日本各地对 PWH 的护理质量。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

Preference of treatment characteristics among people with haemophilia or their caregivers, and physicians in the Japanese healthcare environment

Preference of treatment characteristics among people with haemophilia or their caregivers, and physicians in the Japanese healthcare environment

Introduction

Studies of treatment preferences in haemophilia have been conducted in many countries. This study is the first to examine treatment characteristic preferences among people with haemophilia (PWH) and their caregivers, and physicians in Japan.

Aim

To examine current treatment preferences of PWH and their caregivers, plus those of physicians at haemophilia treatment centres (HTCs) and non-HTCs for different treatment characteristics in Japan.

Methods

Physicians listed on a survey panel were invited to participate in the survey and to refer PWH and caregivers to participate in the survey. Web-based surveys were conducted to examine physician and PWH/caregiver background, prophylaxis background, prophylaxis goals, understanding of haemophilia treatment products, important information sources, preferences while choosing prophylaxis products, understanding of the patient's condition, and potential product switching. A discrete choice experiment exercise was included in the survey.

Results

A total of 107 physicians and 44 PWH/caregivers participated in the study. Key treatment goals of physicians included optimisation of haemophilia management. PWH/caregivers were focused on quality of life and reduced treatment burden. Consistent differences in haemophilia treatment strategies at HTCs and non-HTCs were observed for prescribed treatments, preferences in choosing prophylaxis products, understanding of patients’ condition, and reasons for potential product switch.

Conclusion

Our study utilises real-world survey data and presents preferences for haemophilia treatment characteristics among physicians, PWH and their caregivers in Japan, which could encourage improvements in individualised treatment and disease management. Alignment between treatment approaches at HTCs and non-HTCs could facilitate improvements in the quality of care for PWH across Japan.

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来源期刊
Haemophilia
Haemophilia 医学-血液学
CiteScore
6.50
自引率
28.20%
发文量
226
审稿时长
3-6 weeks
期刊介绍: Haemophilia is an international journal dedicated to the exchange of information regarding the comprehensive care of haemophilia. The Journal contains review articles, original scientific papers and case reports related to haemophilia care, with frequent supplements. Subjects covered include: clotting factor deficiencies, both inherited and acquired: haemophilia A, B, von Willebrand''s disease, deficiencies of factor V, VII, X and XI replacement therapy for clotting factor deficiencies component therapy in the developing world transfusion transmitted disease haemophilia care and paediatrics, orthopaedics, gynaecology and obstetrics nursing laboratory diagnosis carrier detection psycho-social concerns economic issues audit inherited platelet disorders.
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