{"title":"日本血友病患者的血友病关节病管理：非正式共识。","authors":"Kumiko Ono, Azusa Nagao, Yusuke Inagaki, Kagehiro Amano, Miwa Goto, Makoto Kaneda, Kenichiro Makino, Chiai Nagae, Akihiro Sawada, Rie Shirayama, Nobuaki Suzuki, Masahiro Takeyama, Naoya Yamasaki, Hideyuki Takedani","doi":"10.1111/hae.70102","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Introduction</h3>\n \n <p>People with haemophilia who develop haemophilic arthropathy experience disabling physical effects, limiting functionality and quality of life (QOL). Although Clinical Practice Guidelines are available for haemophilia management, consensus on haemophilic arthropathy management is needed.</p>\n </section>\n \n <section>\n \n <h3> Aim</h3>\n \n <p>To develop recommendations for haemophilic arthropathy management in people with haemophilia adapted to the Japanese medical setting.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>Using an informal consensus method, a steering group of 14 clinical experts (orthopaedic, rehabilitation, paediatric, and haematology) in Japan developed 40 literature-based statements and 18 sub-statements related to haemophilic arthropathy management in people with haemophilia. A panel of 30 experts was surveyed by email about their level of agreement with each statement/sub-statement. Responses were tabulated to determine the level of agreement with each statement/sub-statement: strong consensus, consensus, non-consensus, and strong non-consensus.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>The survey was completed by 27/30 respondents. Strong consensus/consensus was reached for 39 statements/sub-statements, non-consensus/strong non-consensus was reached for four (all related to pain assessment and management), and consensus/non-consensus was not reached for 15.</p>\n </section>\n \n <section>\n \n <h3> Conclusion</h3>\n \n <p>Based on insights from a wide range of clinical experts, recommendations for the management of haemophilic arthropathy in people with haemophilia in Japan were developed to aid in addressing the unique challenges faced by healthcare providers in the country. The survey findings indicate that diagnostic tools are needed to aid in haemophilic arthropathy diagnosis. Routine evaluations (physical function, joint ultrasound, QOL, and psychological), activities (physical therapy, rehabilitation, aerobic exercise, and sports), appropriate pain management, and proactive screening for osteoporosis are important when managing haemophilic arthropathy in people with haemophilia.</p>\n </section>\n </div>","PeriodicalId":12819,"journal":{"name":"Haemophilia","volume":"31 5","pages":"1054-1065"},"PeriodicalIF":3.0000,"publicationDate":"2025-08-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hae.70102","citationCount":"0","resultStr":"{\"title\":\"Managing Haemophilic Arthropathy in People With Haemophilia in Japan: An Informal Consensus\",\"authors\":\"Kumiko Ono, Azusa Nagao, Yusuke Inagaki, Kagehiro Amano, Miwa Goto, Makoto Kaneda, Kenichiro Makino, Chiai Nagae, Akihiro Sawada, Rie Shirayama, Nobuaki Suzuki, Masahiro Takeyama, Naoya Yamasaki, Hideyuki Takedani\",\"doi\":\"10.1111/hae.70102\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n \\n <section>\\n \\n <h3> Introduction</h3>\\n \\n <p>People with haemophilia who develop haemophilic arthropathy experience disabling physical effects, limiting functionality and quality of life (QOL). Although Clinical Practice Guidelines are available for haemophilia management, consensus on haemophilic arthropathy management is needed.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Aim</h3>\\n \\n <p>To develop recommendations for haemophilic arthropathy management in people with haemophilia adapted to the Japanese medical setting.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Methods</h3>\\n \\n <p>Using an informal consensus method, a steering group of 14 clinical experts (orthopaedic, rehabilitation, paediatric, and haematology) in Japan developed 40 literature-based statements and 18 sub-statements related to haemophilic arthropathy management in people with haemophilia. A panel of 30 experts was surveyed by email about their level of agreement with each statement/sub-statement. Responses were tabulated to determine the level of agreement with each statement/sub-statement: strong consensus, consensus, non-consensus, and strong non-consensus.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Results</h3>\\n \\n <p>The survey was completed by 27/30 respondents. Strong consensus/consensus was reached for 39 statements/sub-statements, non-consensus/strong non-consensus was reached for four (all related to pain assessment and management), and consensus/non-consensus was not reached for 15.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Conclusion</h3>\\n \\n <p>Based on insights from a wide range of clinical experts, recommendations for the management of haemophilic arthropathy in people with haemophilia in Japan were developed to aid in addressing the unique challenges faced by healthcare providers in the country. The survey findings indicate that diagnostic tools are needed to aid in haemophilic arthropathy diagnosis. Routine evaluations (physical function, joint ultrasound, QOL, and psychological), activities (physical therapy, rehabilitation, aerobic exercise, and sports), appropriate pain management, and proactive screening for osteoporosis are important when managing haemophilic arthropathy in people with haemophilia.</p>\\n </section>\\n </div>\",\"PeriodicalId\":12819,\"journal\":{\"name\":\"Haemophilia\",\"volume\":\"31 5\",\"pages\":\"1054-1065\"},\"PeriodicalIF\":3.0000,\"publicationDate\":\"2025-08-02\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hae.70102\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Haemophilia\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1111/hae.70102\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"HEMATOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Haemophilia","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1111/hae.70102","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"HEMATOLOGY","Score":null,"Total":0}
Managing Haemophilic Arthropathy in People With Haemophilia in Japan: An Informal Consensus
Introduction
People with haemophilia who develop haemophilic arthropathy experience disabling physical effects, limiting functionality and quality of life (QOL). Although Clinical Practice Guidelines are available for haemophilia management, consensus on haemophilic arthropathy management is needed.
Aim
To develop recommendations for haemophilic arthropathy management in people with haemophilia adapted to the Japanese medical setting.
Methods
Using an informal consensus method, a steering group of 14 clinical experts (orthopaedic, rehabilitation, paediatric, and haematology) in Japan developed 40 literature-based statements and 18 sub-statements related to haemophilic arthropathy management in people with haemophilia. A panel of 30 experts was surveyed by email about their level of agreement with each statement/sub-statement. Responses were tabulated to determine the level of agreement with each statement/sub-statement: strong consensus, consensus, non-consensus, and strong non-consensus.
Results
The survey was completed by 27/30 respondents. Strong consensus/consensus was reached for 39 statements/sub-statements, non-consensus/strong non-consensus was reached for four (all related to pain assessment and management), and consensus/non-consensus was not reached for 15.
Conclusion
Based on insights from a wide range of clinical experts, recommendations for the management of haemophilic arthropathy in people with haemophilia in Japan were developed to aid in addressing the unique challenges faced by healthcare providers in the country. The survey findings indicate that diagnostic tools are needed to aid in haemophilic arthropathy diagnosis. Routine evaluations (physical function, joint ultrasound, QOL, and psychological), activities (physical therapy, rehabilitation, aerobic exercise, and sports), appropriate pain management, and proactive screening for osteoporosis are important when managing haemophilic arthropathy in people with haemophilia.
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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