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欧洲为遗传性出血性疾病患者提供物理治疗的护理原则:物理治疗师和患者的观点。

European principles of care for physiotherapy provision for persons with inherited bleeding disorders: Perspectives of physiotherapists and patients.

作者信息

de Kleijn Piet, Duport G, Jansone K, Marinić M, McLaughlin P, Noone D, Ramishvili L, Tollwé A, Stephensen D

机构信息

European Haemophilia Consortium (EHC), Brussels, Belgium.

Association Française des Hémophiles (French Haemophilia Association), Paris, France.

出版信息

Haemophilia. 2022 Jul;28(4):649-655. doi: 10.1111/hae.14566. Epub 2022 May 4.

Abstract

INTRODUCTION

In their Chronic Care Model, the World Health Organisation states that people with chronic disorders and their families should be informed about the expected course, potential complications, and effective strategies to prevent complications and manage symptoms. Physiotherapists are a key professional group involved in the triage, assessment and management of musculoskeletal conditions of persons with a bleeding disorder (PWBD). Nevertheless, recent reports describe access to physiotherapy for those with these conditions is only sometimes available.

AIM

Access to high quality individualised physiotherapy should be ensured for all PWBD, including those with mild and moderate severities, male and female, people with von Willebrand Disease (vWD) and other rare bleeding disorders. Physiotherapy should be viewed as a basic requisite in their multidisciplinary care.

METHODS/ RESULTS: Following a series of meetings with physiotherapists representing the European Association for Haemophilia and Allied Disorders (EAHAD) and PWBD representing the European Haemophilia Consortium (EHC) and a review of publications in the field, eight core principles of physiotherapy care for persons with a bleeding disorder have been co-produced by EAHAD and EHC.

CONCLUSION

These eight principles outline optimum standards of practice in order to advocate personalised patient-centred care for physical health in which both prevention and interventions include shared decision making, and supported self-management.

摘要

引言

世界卫生组织在其慢性病照护模式中指出,患有慢性疾病的患者及其家人应了解疾病的预期病程、潜在并发症以及预防并发症和控制症状的有效策略。物理治疗师是参与血友病患者(PWBD)肌肉骨骼疾病分诊、评估和管理的关键专业群体。然而,最近的报告表明,患有这些疾病的人有时才能获得物理治疗服务。

目的

应确保所有PWBD都能获得高质量的个性化物理治疗,包括病情轻重不同的患者、男性和女性、血管性血友病(vWD)患者以及其他罕见出血性疾病患者。物理治疗应被视为其多学科照护的基本必要条件。

方法/结果:在与代表欧洲血友病及相关疾病协会(EAHAD)的物理治疗师以及代表欧洲血友病联盟(EHC)的PWBD举行一系列会议并对该领域的出版物进行综述之后,EAHAD和EHC共同制定了针对血友病患者的物理治疗照护的八项核心原则。

结论

这八项原则概述了最佳实践标准,以倡导以患者为中心的个性化身体健康照护,其中预防和干预都包括共同决策以及支持自我管理。

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