| Chen et al. | Evolution of congenital haemophilia care in Taiwan https://doi.org/10.1016/j.jfma.2021.07.017 | 2022 | This review aims to take a closer look at the evolution of haemophilia care in Taiwan over the past 35 years, identifying factors that helped to improve outcomes for people with haemophilia, while highlighting areas where further efforts may be warranted. |
| Arya et al. | Invisible bleeds: Lived experiences and barriers to care for men with hemophilia https://doi.org/10.1111/jth.15570 | 2022 | A qualitative, descriptive study using interviews to describe the experiences of men with haemophilia in Canada. |
| Biasoli et al. | Promoting physical activity in people with haemophilia: the MEMO (Movement for persons with haEMOphilia) expert consensus project https://doi.org/10.2450/2021.0138-21 | 2022 | Article describing how Italian experts in haemophilia care undertook a consensus procedure to provide practical guidance on when and how to recommend physical exercise programmes to people with haemophilia in clinical practice. |
| Hermans et al. | Hemophilia treatment in 2021: Choosing the “optimal” treatment using an integrative, patient-oriented approach to shared decision-making between patients and clinicians https://doi.org/10.1016/j.blre.2021.100890 | 2022 | Article describing the development of a practical, patient-oriented algorithm to facilitate shared treatment decision-making between clinicians and patients, by a multidisciplinary expert panel. |
| St-Louis et al. | Multidisciplinary team care of patients with hemophilic arthropathy: A qualitative assessment of contemporary practice in the UK and Canada : Canada/UK: MDT Practices for Hemophilia https://doi.org/10.1177/10760296211070002 | 2022 | Article describing structured interviews to explore approaches to comprehensive haemophilia and arthropathy care among 24 healthcare professionals from multidisciplinary teams in Canada and the UK. |
| Beny et al. | Haemophilia in France: Modelisation of the clinical pathway for patients https://doi.org/10.3390/ijerph19020646 | 2022 | A qualitative study to establish a current overview of the different members involved in the management of patients with haemophilia and to provide an accurate description of the patient trajectory, by interviewing principal healthcare professionals from four haemophilia services in France. |
| Gualtierotti et al. | Current and emerging approaches for pain management in hemophilic arthropathy https://doi.org/10.1007/s40122-021-00345-x | 2022 | Review of the literature regarding current and emerging strategies for pain treatment in haemophilic arthropathy. |
| Wilkins et al. | Twelve-month prevalence of haemarthrosis and joint disease using the Haemophilia Joint Health score: evaluation of the UK National Haemophilia Database and Haemtrack patient reported data: an observational study https://doi.org/10.1136/bmjopen-2021-052358 | 2022 | An observational study reporting the 12-month prevalence of joint bleeds from the National Haemophilia Database (NHD) and Haemtrack, and concurrent joint disease status using the haemophilia joint health score (HJHS), in children and adults with severe haemophilia A and B without a current inhibitor. |
| Soto et al. | The impact of improving haemophilia A management within the Spanish National Healthcare System: a social return on investment analysis https://doi.org/10.1186/s12913-021-07447-4 | 2022 | Article describing a study to establish a set of proposals to improve haemophilia A management within the Spanish National Health System (SNHS) and to estimate the impact its hypothetical implementation would generate from a clinical, healthcare, economic, and social perspective. |
| Musetti et al. | COVID19 in hematological patients and telemedicine: lessons learned across Europe and the US https://doi.org/10.1097/qco.0000000000000843 | 2022 | Review describing the state-of-the-art of telemedicine in haematology through the description of most relevant studies published in the pre-COVID-19 and during the COVID-19 era. |
| Zapotocka et al. | First experience of a hemophilia monitoring platform: florio HAEMO https://doi.org/10.1002/rth2.12685 | 2022 | A survey to assess intuitiveness, ease-of-use, and patient preference of florio HAEMO in Central Europe using a cross-sectional survey. |
| Germini et al. | User-centered development and testing of the online Patient-Reported Outcomes, Burdens, and Experiences (PROBE) survey and the myPROBE app and integration with the Canadian Bleeding Disorder Registry: Mixed methods study https://doi.org/10.2196/30797 | 2022 | A study to assess the needs of relevant stakeholders involved in the use of Patient-Reported Outcomes, Burdens, and Experiences, to develop the software infrastructure needed to meet these needs, and to test the usability of the final product. |
| Aliaga-Castillo et al. | Safety and effectiveness of telerehabilitation program in people with severe haemophilia in Chile. A qualitative study https://doi.org/10.1016/j.msksp.2022.102565 | 2022 | A qualitative study to describe the usefulness, safety, effectiveness and limitations of a telerehabilitation program applied in people with severe haemophilia implemented during the COVID-19 pandemic in Chile. |
| Lee et al. | Adding a clinical hemophilia pharmacist to the hemophilia comprehensive care model improves health care-related outcomes and drug-related costs in an integrated health care system https://doi.org/10.7812/tpp/21.192 | 2022 | A multicentre, retrospective analysis to evaluate the impact of the addition of a clinical pharmacist to the core haemophilia team on bleeding outcomes, medication access and adherence, and cost within an integrated health care system. |
| Bartlett et al. | Defining the micro and macro roles of a hemophilia treatment center social worker in the United States from an interdisciplinary team perspective https://doi.org/10.1111/hae.14612 | 2022 | Article reporting the findings of a national online survey, conducted in 2020, to determine the views and attitudes of what the social worker role is by haemophilia treatment centre staff. |
| Coriu et al. | Editorial: Modern approaches to hemophilia management: Gene therapy and beyond https://doi.org/10.3389/fmed.2022.859710 | 2022 | An editorial that outlines the articles submitted and published in the present Research Topic on haemophilia diagnosis and management, including an article specifically related to mobile health technology. |
| Cortesi et al. | Haemophilia management and treatment: An Italian survey on patients', caregivers' and clinicians' point of view https://doi.org/10.1111/hae.14504 | 2022 | Large, national study which used surveys to assess the management satisfaction and unmet needs from the perspective of Italian patients with haemophilia without inhibitors (or caregivers of children) and of specialist physicians. |
| Windyga et al. | Changing paradigms of hemophilia care across larger specialized treatment centers in the European region https://doi.org/10.1177/20406207221088462 | 2022 | Survey conducted by the European Collaborative Haemophilia Network (ECHN) to track recent changes in the haemophilia treatment landscape, determine the impact of these changes on haemophilia treatment centres and comprehensive care centres in the region, and to look into the future of care as applied to people with haemophilia. |
| Lopez et al. | Defining the impact of social drivers on health outcomes for people with inherited bleeding disorders https://doi.org/10.3390/jcm11154443 | 2022 | A systematic review of published literature to examine the impact of social determinants of health on health outcomes in people with inherited bleeding disorders. |
| Volot et al. | Impact of first COVID-19 lockdown on paediatric and adult haemophilia patients treated in a French Haemophilia Comprehensive Care Centre https://doi.org/10.1111/hae.14526 | 2022 | A prospective, cross-sectional telephone survey to investigate the impact of the first COVID-19 lockdown on haemophilia patients in terms of symptoms, management, medication adherence, mental health and lifestyle behaviours. |
| de Kleijn et al. | European principles of care for physiotherapy provision for persons with inherited bleeding disorders: Perspectives of physiotherapists and patients https://doi.org/10.1111/hae.14566 | 2022 | Following a series of meetings with physiotherapists representing the European Association for Haemophilia and Allied Disorders (EAHAD) and persons with bleeding disorders 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 were co-produced by EAHAD and EHC. |
| Newman et al. | Physical therapy within US HTCs: A multicentre survey of utilization, practice patterns and pain management approaches https://doi.org/10.1111/hae.14501 | 2022 | A multicentre survey to describe utilisation, role responsibilities and practice patterns of US physical therapists in haemophilia treatment centres. |
| Valentino et al. | Integrated hemophilia patient care via a national network of care centers in the United States: A model for rare coagulation disorders https://doi.org/10.2147/jbm.s325031 | 2021 | Article providing a comprehensive description of the core components of a haemophilia treatment centre, and the regional and national networks in the United States, which together achieve their incomparable value for all stakeholders. |
| Cheung et al. | Technology acceptance among patients with hemophilia in Hong Kong and their expectations of a mobile health app to promote self-management: Survey study https://doi.org/10.2196/27985 | 2021 | A cross-sectional survey to evaluate patients' level of technology acceptance and identify their expectations of the use of mobile technology for self-management of haemophilia. |
| Flannery et al. | Physiotherapy after COVID-19 – “Zoom or room” https://doi.org/10.1111/hae.14166 | 2021 | A letter to the editor describing outcomes from a virtual meeting of UK NHS haemophilia physiotherapists to share how services had been affected during the pandemic and review potential implications for physiotherapy in the future. |
| Martinez Garcia et al. | Organization of a reference haemophilia unit and its change of activity during the COVID-19 pandemic https://doi.org/10.1111/hae.14160 | 2021 | A letter to the editor describing how the Haemophilia Unit at Vall d´Hebron University Hospital in Barcelona, Spain adapted to the COVID-19 pandemic. |
| Timmer et al. | Coordinating physiotherapy care for persons with haemophilia https://doi.org/10.1111/hae.14404 | 2021 | Study using a Delphi procedure, with e-mailed questionnaires and a consensus meeting, to explore experiences of stakeholders with primary care physiotherapy for persons with haemophilia and develop recommendations to optimise physiotherapy care coordination. |
| Liu et al. | Current status of haemophilia inhibitor management in mainland China: a haemophilia treatment centres survey on treatment preferences and real-world clinical practices https://doi.org/10.1111/bjh.17677 | 2021 | Study using questionnaires to investigate the current experience and expertise for haemophilia inhibitor patient management in haemophilia treatment centres in mainland China. |
| Mulder et al. | Developing clinical practice guidelines for physiotherapists working with people with inherited bleeding disorders https://doi.org/10.1111/hae.14327 | 2021 | An article describing the process used by the Canadian Physiotherapists in Hemophilia Care (CPHC) to develop evidence-based clinical practice guidelines to inform best practice, guide decisionmaking and help educate physiotherapists, students, and other team members about the physiotherapy management of people with bleeding disorders. |
| Bhatt et al. | Using an educational intervention to assess and improve disease-specific knowledge and health literacy and numeracy in adolescents and young adults with haemophilia A and B https://doi.org/10.1111/hae.14228 | 2021 | A longitudinal pilot study to test the ability of an educational intervention to improve knowledge, health literacy, health numeracy, adherence and joint health in adolescent and young adult males with haemophilia. |
| McLaughlin et al. | Comprehensive care on paper only? The challenge for physiotherapy provision in day to day haemophilia practice https://doi.org/10.1111/hae.14150 | 2021 | No abstract available. |
| Kennedy et al. | A systematic review of physical activity in people with haemophilia and its relationship with bleeding phenotype and treatment regimen https://doi.org/10.1111/hae.14282 | 2021 | This review aimed to systematically assess the data that are available regarding physical activity levels amongst people with haemophilia, as well as the relationship between physical activity and bleeding. |
| Lobet et al. | The role of physiotherapy in the new treatment landscape for haemophilia https://doi.org/10.3390/jcm10132822 | 2021 | This paper considers whether there will still be a need for physiotherapy in the era of advanced therapies and discusses ways in which services should evolve to complement emerging treatment paradigms for haemostasis in people with haemophilia. |
| Baghaipour et al. | Tailored prophylaxis in children with severe hemophilia: A four-year Iranian study https://doi.org/10.1016/j.transci.2021.103212 | 2021 | Paper reporting a single-centre experience of tailored prophylaxis in children affected by haemophilia A and haemophilia B. |
| Dirzu et al. | Mobile health technology for the personalized therapy of hemophilia https://doi.org/10.3389/fmed.2021.711973 | 2021 | Review of the currently available treatment for haemophilia patients and the role of IT software in treatment monitoring. |
| Mancuso et al. | Prophylaxis in children with haemophilia in an evolving treatment landscape https://doi.org/10.1111/hae.14412 | 2021 | A paper reviewing key factors that determine the choice of prophylaxis in young children. |
| Krumb et al. | Living with a “hemophilia-free mind” – The new ambition of hemophilia care? https://doi.org/10.1002/rth2.12567 | 2021 | A review article which proposes to examine the absence of psychological burden and of permanent thoughts about the disease and its complications in people with haemophilia as a new ambition that should guide haemophilia care and research in the future. |
| Davari et al. | An efficient and effective ambulatory service model for severe hemophilia-A patients; an introduction to a novel home care model. PMC8610799 | 2021 | This study aimed to design a useful ambulatory service model for patients with severe haemophilia A. |
| Ghosh & Ghosh | Overcoming the challenges of treating hemophilia in resource-limited nations: a focus on medication access and adherence https://doi.org/10.1080/17474086.2021.1957826 | 2021 | Review describing how clotting products can be made accessible for persons with haemophilia in resource-limited nations, and how its continuous supply and distribution can be maintained and improved. |
| Samelson-Jones & George | Haemophilia care: the only constant is change https://doi.org/10.1111/bjh.17661 | 2021 | A review of haemophilia treatment from the use of whole blood and large volume plasma transfusions to increasingly sophisticated biotechnologies. |
| Hotea et al. | Current therapeutic approaches in the management of hemophilia – a consensus view by the Romanian Society of Hematology https://doi.org/10.21037/atm-21-747 | 2021 | This review analyses the pros and cons of all the major discoveries in the diagnosis and treatment of haemophilia A and B and identifies key areas of research where improvements are needed. |
| Sun et al. | Factor VIII replacement prophylaxis in patients with hemophilia A transitioning to adults: a systematic literature review https://doi.org/10.1186/s13023-021-01919-w | 2021 | A systematic literature review to emphasise adherence to and efficiency of prophylactic treatment in adults with haemophilia. |
| Miesbach et al. | Evolution of haemophilia integrated care in the era of gene therapy: Treatment centre's readiness in United States and EU. https://doi.org/10.1111/hae.14309 | 2021 | Article summarising a discussion of haemophilia experts in 2020 on strategies for the safe introduction of gene therapy into clinical practice and the identification of its potential long-term effects on haemophilia care models in the US and Europe. |
| Arya et al. | “They don't really take my bleeds seriously”: Barriers to care for women with inherited bleeding disorders https://doi.org/10.1111/jth.15311 | 2021 | A qualitative descriptive study, using telephone interviews with women with inherited bleeding disorders, to evaluate and describe barriers to care. |
| Van Galen et al. | European principles of care for women and girls with inherited bleeding disorders https://doi.org/10.1111/hae.14379 | 2021 | This publication aimed to develop practical principles of care to promote standardisation of care for women and girls with inherited bleeding disorders within European Haemophilia Treatment and Comprehensive Care Centres. |
| Mbanya et al. | Hemophilia care in Africa: Status and challenges https://doi.org/10.1016/j.tracli.2021.01.008 | 2021 | This review article describes the evolution in haemophilia care in Africa, with a focus on countries with varying degrees of care (e.g., Cameroon, Senegal and Egypt). |
| Mauser-Bunschoten et al. | Managing women-specific bleeding in inherited bleeding disorders: A multidisciplinary approach https://doi.org/10.1111/hae.14221 | 2021 | This publication aims to support appropriate multidisciplinary care for women and girls with bleeding disorders in haemophilia treatment centres. |
![Telehealth care model for haemophilia care, implemented during the coronavirus disease 2019 (COVID-19) pandemic at a haemophilia comprehensive care centre in Dublin, Ireland [15]
From: O’Donovan M, Buckley C, Benson J, et al. Telehealth for delivery of haemophilia comprehensive care during the COVID-19 pandemic. Haemophilia (Wiley) 2020; 26(6): 984-990. doi: 10.1111/hae.14156. © 2020 John Wiley & Sons Ltd.](https://sciendo-parsed.s3.eu-central-1.amazonaws.com/6472175b215d2f6c89dbba18/j_jhp-2023-0022_fig_001.jpg?X-Amz-Algorithm=AWS4-HMAC-SHA256&X-Amz-Content-Sha256=UNSIGNED-PAYLOAD&X-Amz-Credential=ASIA6AP2G7AKPWNNMSJZ%2F20251212%2Feu-central-1%2Fs3%2Faws4_request&X-Amz-Date=20251212T014042Z&X-Amz-Expires=3600&X-Amz-Security-Token=IQoJb3JpZ2luX2VjEC8aDGV1LWNlbnRyYWwtMSJHMEUCIQDaFkKSNCVBhDsTZHGwld9g9k2A1Srk8bROfDlxbVxDfAIgSVRBhgb7qQoU4a7%2BzzyRAU4Xx0wy9AuOc8ln0MhNj0QqxgUI%2BP%2F%2F%2F%2F%2F%2F%2F%2F%2F%2FARACGgw5NjMxMzQyODk5NDAiDJXfe4g81h%2Fp%2BWBcMSqaBR%2FGP0VLdbz1hajdxD4mM0IXIAz34k%2F5CTORbVDcX0kHioqJrFrOL4X2K%2FBTl07Z9LZLM8vssSeBERmhE4i2ZUFz7mRkC80hQEQL1WJolNI9HLxsED1AFI4fKpmkxDnJebq9P1G%2FXXJE3vnz74iIhCo1xvh%2FSh%2F4btL2HOh6oQ8h9McJqZQNaqp2%2BN5Y2dFKxQPYjIKgo%2FqE%2B3LBo7y%2F3nCzYypWo2E2f1qcP6XFpPhX9b%2F2l6rLC6jO9Gb1zcjMaNMHeqXiu%2FVi%2BLzWpSxR%2Fnh8xT09%2BgVYMk5%2Fij1%2BCYuc%2FlAPjEyvvQ1kG53znLnF4P8JVYehQevZ7BrrUnrB4vXhdu3RKXINbHF429O%2BZST%2B6BX9Sr7ogw9FNIVVyFHMstPSJ0FkAh6B3QphfBiTX2vIQcOsumu7%2FRVN%2B2RndFT9tpNwXsmNOGIw%2BbdcE%2FbHMjb89fZZ%2Fr4htttiveEHw9fuUtpBwWhdcs8J5VB5y0VAYqXx7RWvRws%2FEIAIc0Y03b1uNFgGuOqGSdSF0lXexbuKMjm9wV76wmNDWiJnpIJpGkBI7ekG%2BXrFHf7Lp45YuOwdUvsVAm%2BiNY3h7P3LB3Bgj5j%2F9FjaUm3546H9xUBEiilRNkKHe2hVbRpIfY8YLnWLy30VjbXj7Sgzg9DjLEEivmOhvGaWejek%2FANqOSLiVAp63rKUdnsNJC6etl1Dbon5ie26JU%2F2NP1lfghR7hUDZ3SMrUZJ0GNQvokSExhjzivjaQ2LVBLr7hj6gptVZ5B0r0pOdUl7gAzIEhkBpykVhpHV3Tgg6UajWqh80sv52EWMUm%2BBIZ1wjekXA9x4ZfIUH%2FCQ4qbmRwGHCeGqTl4rdIJW9gViJ0HSo8Fh0Ye35ZJ1l67lYrwWszDkk%2B3JBjqxAWz0V0VeuxhkpR8tiDI5AEWsTZUsTZeF28EDKM2ciTR%2BNYJy6xST%2BgKMU77QyO4F8JH6oCfm9mzsdznUKY6HKx2zL2%2BGaZdjKA9tbuD%2F1yduKZB%2BPybQ37NsP88%2BCuouL83pZR6btNw1z52Noh9AHDT2xAPlUA1fGnNmqypbZv3Ww7lwq7ZAekO1QqJtJCN61EwFwRv%2BhY3U04CY2nSnsTsFdeXRiUqu6jl28rRYYneMTw%3D%3D&X-Amz-Signature=1c87ab7a9309d20ae7c762fa3d9b4e395e5510a98d055d53515910eebf9067f3&X-Amz-SignedHeaders=host&x-amz-checksum-mode=ENABLED&x-id=GetObject)