Abstract：
BACKGROUND: As a result of centralisation of haemophilia care to a limited number of intramural settings, many persons with haemophilia have to travel long distances to attend their haemophilia specialised treatment centre. However, regular physiotherapy treatment can be provided by primary care physiotherapists in the person\'s own region. Due to the rarity of the disease most primary care physiotherapists have limited experience with this population. This study aims to provide a clinical practice guideline for primary care physiotherapists working with persons with bleeding disorders.
METHODS: A list of the most urgent key-questions was derived from a previous study. Literature was summarised using the grading of recommendations assessment, development, and evaluation (GRADE) evidence-to-decision framework. Recommendations were drafted based on four 90 min consensus meetings with expert physiotherapists. Recommendations were finalised after feedback and >80% consensus of all stakeholders (including PWH, physiotherapists, haematologists and the corresponding societies).
RESULTS: A list of 82 recommendations was formulated to support primary care physiotherapists when treating a person with a bleeding disorder. These recommendations could be divided into 13 categories: two including recommendations on organisation of care, six on therapy for adult patients with bleeding disorders and five on therapy adaptations for paediatric care. Therapy recommendations included treatment after a joint- or muscle bleed, haemophilic arthropathy, chronic synovitis, non-haemophilia related conditions and orthopaedic surgery.
CONCLUSIONS: An evidence-based practice guideline, based on current evidence from literature and clinical expertise, has been developed for primary care physiotherapists treating a person with haemophilia. To improve care, the recommendations should be implemented in daily practice.
METHODS: A list of the most urgent key-questions was derived from a previous study. Literature was summarised using the grading of recommendations assessment, development, and evaluation (GRADE) evidence-to-decision framework. Recommendations were drafted based on four 90 min consensus meetings with expert physiotherapists. Recommendations were finalised after feedback and >80% consensus of all stakeholders (including PWH, physiotherapists, haematologists and the corresponding societies).
RESULTS: A list of 82 recommendations was formulated to support primary care physiotherapists when treating a person with a bleeding disorder. These recommendations could be divided into 13 categories: two including recommendations on organisation of care, six on therapy for adult patients with bleeding disorders and five on therapy adaptations for paediatric care. Therapy recommendations included treatment after a joint- or muscle bleed, haemophilic arthropathy, chronic synovitis, non-haemophilia related conditions and orthopaedic surgery.
CONCLUSIONS: An evidence-based practice guideline, based on current evidence from literature and clinical expertise, has been developed for primary care physiotherapists treating a person with haemophilia. To improve care, the recommendations should be implemented in daily practice.
摘要：
背景：由于血友病护理集中于有限数量的壁内环境，许多血友病患者必须长途跋涉才能进入血友病专业治疗中心。然而,定期的理疗治疗可以提供的初级保健物理治疗师在自己的区域。由于该疾病的罕见性，大多数初级保健物理治疗师对该人群的经验有限。这项研究旨在为患有出血性疾病的初级保健物理治疗师提供临床实践指南。
方法：最紧迫的关键问题列表来自先前的研究。文献是使用推荐评估的分级进行总结的，发展,和评估(等级)证据到决策框架。建议是根据与物理治疗师专家进行的四次90分钟共识会议起草的。建议在反馈和>80%的所有利益相关者达成共识(包括PWH，物理治疗师,血液病学家和相应的社团)。
结果：制定了82项建议，以支持初级保健物理治疗师治疗出血性疾病患者。这些建议可分为13类:两类，包括关于护理组织的建议，六项关于成人出血性疾病患者的治疗，五项关于儿科护理的治疗适应。治疗建议包括关节或肌肉出血后的治疗，血友病性关节病,慢性滑膜炎,非血友病相关疾病和骨科手术。
结论：基于证据的实践指南，根据文献和临床专业知识的现有证据，已开发用于治疗血友病患者的初级保健物理治疗师。为了改善护理，建议应在日常实践中实施。
方法：最紧迫的关键问题列表来自先前的研究。文献是使用推荐评估的分级进行总结的，发展,和评估(等级)证据到决策框架。建议是根据与物理治疗师专家进行的四次90分钟共识会议起草的。建议在反馈和>80%的所有利益相关者达成共识(包括PWH，物理治疗师,血液病学家和相应的社团)。
结果：制定了82项建议，以支持初级保健物理治疗师治疗出血性疾病患者。这些建议可分为13类:两类，包括关于护理组织的建议，六项关于成人出血性疾病患者的治疗，五项关于儿科护理的治疗适应。治疗建议包括关节或肌肉出血后的治疗，血友病性关节病,慢性滑膜炎,非血友病相关疾病和骨科手术。
结论：基于证据的实践指南，根据文献和临床专业知识的现有证据，已开发用于治疗血友病患者的初级保健物理治疗师。为了改善护理，建议应在日常实践中实施。
