A multidisciplinary approach to optimising the virtual management of haemophilia: a roundtable meeting of UK experts
, , , , , et | 29 déc. 2023
À propos de cet article
Article Category: Clinical Practice
Publié en ligne: 29 déc. 2023
Pages: 138 - 154
DOI: https://doi.org/10.2478/jhp-2023-0022
Mots clés
© 2023 Gary Benson et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.
Figure 1.
![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-Date=20240613T152926Z&X-Amz-SignedHeaders=host&X-Amz-Expires=18000&X-Amz-Credential=AKIA6AP2G7AKP25APDM2%2F20240613%2Feu-central-1%2Fs3%2Faws4_request&X-Amz-Signature=98123712473ed81b84e9253a02fad825dec6e03dbcadf79b59c3b9056b1efc0c)
Relevant articles identified by the additional literature searches, published between June 2021 and September 2022. Please note that not all the literature outlined in the table has been included in the manuscript.
| AUTHORS | TITLE AND DOI | YEAR | SUMMARY |
|---|---|---|---|
| Chen et al. | Evolution of congenital haemophilia care in Taiwan |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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” |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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 |
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? |
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. |
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 |
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 |
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 |
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 |
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. |
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 |
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 |
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 |
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 |
2021 | This publication aims to support appropriate multidisciplinary care for women and girls with bleeding disorders in haemophilia treatment centres. |
Search strings used within PubMed to identify additional relevant literature published between June 2021 and September 2022.
| DATE OF SEARCH | SEARCH NUMBER | SEARCH STRING |
|---|---|---|
| 09 February 2022 (To identify additional relevant literature from June 2021 to 09 February 2022) | 1 | Hemophilia AND (Telemedicine OR Telehealth OR Teleconsultation OR Virtual) |
| 2 | Hemophilia AND (Multidisciplinary OR Comprehensive OR Team) | |
| 3 | Hemophilia AND Care | |
| 4 | Hemophilia [tiab] AND Care [tiab] | |
| 5 | Hemophilia AND Physiotherapy | |
| 6 | Hemophilia AND Care AND (Child* OR Adolescent OR Paediatric OR Pediatric) | |
| 7 | Hemophilia AND Hybrid | |
| 8 | Hemophilia AND Care AND Psychology | |
| 14 September 2022 (To identify additional relevant literature from 09 February 2022 to 14 September 2022) | 1 | Hemophilia AND (Telemedicine OR Telehealth OR Teleconsultation OR Virtual) |
| 2 | Hemophilia AND (Multidisciplinary OR Comprehensive OR Team) |
Relevant publications identified by the initial literature searches completed in June 2021. Please note that not all the literature outlined in the table has been included in the manuscript.
| AUTHORS | TITLE AND DOI | YEAR | SUMMARY |
|---|---|---|---|
| Olusanya et al. | HemPHL: A personal health library and mHealth recommender to promote self-management of hemophilia |
2021 | Paper outlining a haemophilia-focused, user-centred app to gather, manage, and exchange tailored health information and recommendations to facilitate self-management and home therapy. |
| Alvarez-Roman et al. | Care for children with haemophilia during COVID-19: Data of the PedNet study group |
2021 | Survey from PedNet study group to investigate access to haemophilia treatment centres, use of telemedicine programme, supportive care, the way patients were informed about changes, treatment, clinical trials and external monitoring schedule. |
| Zapata & Araya | Educational needs of parents of hemophiliac children: An approach to comprehensive care |
2021 | Descriptive qualitative study investigating the educational needs of parents with haemophilic children, including venepuncture training, injury prevention and pathophysiological aspects of the disease. |
| Dorgalaleh et al. | Challenges and concerns of patients with congenital bleeding disorders affected by coronavirus disease 2019 |
2021 | Study assessing the main challenges of COVID-19 infection to patients with congenital bleeding disorders such as their feelings and preventative behaviours. |
| Ng et al. | Improvements in communication and coordination of care in a hemophilia treatment center |
2021 | Quality improvement project to improve the coordination and communication with patients by establishing primary assignments of clinical staff to individual patients. |
| Sayers et al. | Virtual consultations: Providing alternative ways of supporting patients with inherited bleeding disorders |
2020 | Letter to the editor looking at virtual consultations to support patients with haemophilia. |
| Tiede et al. | Quality of electronic treatment records and adherence to prophylaxis in haemophilia and von Willebrand disease: Systematic assessments from an electronic diary |
2020 | Study assessing documentation quality and adherence to prophylactic regimens in patients with haemophilia or von Willebrand disease who are using Haemoassist™ 2. |
| O’Donovan et al. | Telehealth for delivery of haemophilia comprehensive care during the COVID-19 pandemic |
2020 | A systematic evaluation performed to survey patient and healthcare professional experience and compare clinical activity levels with telehealth to inperson attendances. |
| Zhang et al. | Management of haemophilia patients in the COVID-19 pandemic: Experience in Wuhan and Tianjin, two differently affected cities in China |
2020 | Study identifying lessons learned from haemophilia care experience in Wuhan (COVID-19 outbreak epicentre in China) and Tianjin (with relatively low COVID-19 incidence) in the pandemic. |
| Alvarez-Roman et al. | COVID-19 and telemedicine in haemophilia in a patient with severe haemophilia A and orthopaedic surgery |
2020 | Case of patient with severe haemophilia A who underwent major orthopaedic surgery managed postoperatively by telemedicine from a comprehensive haemophilia treatment centre. |
| Alvarez-Roman et al. | Clinical trials and Haemophilia during the COVID-19 pandemic: Madrid's experience |
2020 | Letter to editor about adapting haemophilia care and clinical trials during the pandemic. |
| Qian et al. | Telehealth interventions for improving selfmanagement in patients with hemophilia: Scoping review of clinical studies |
2019 | Scoping review summarising the literature evaluating the effectiveness of telehealth interventions for improving health outcomes in patients with haemophilia. |
| Rossnagel et al. | Haemophilia home care: A qualitative evaluation study of the Be Involved infusion program |
2019 | Qualitative evaluation exploring the real-world effectiveness and impact of the Be Involved home infusion service, from provider, programme enduser and needs analysis perspectives. |
| Boccalandro et al. | Telemedicine and telerehabilitation: current and forthcoming applications in haemophilia |
2019 | Article aiming to identify and discuss the tools available for the management of people with haemophilia by means of telemedicine and information technology. |
| Banchev et al. | Impact of telemedicine tools on record keeping and compliance in haemophilia care |
2019 | Article evaluating the effects of an e-diary, Haemoassist, on recording and patient compliance with therapy. |
| Mondorf et al. | 2019 | Report describing the technical features and potential advantages of the application of electronic haemophilia treatment diary |
|
| Cuesta-Barriuso et al. | Effectiveness of the Medtep Hemophilia online platform for adherence to prophylactic treatment in haemophilia patients: Results from a 1-year observational study |
2018 | Study assessing the effectiveness of Medtep Hemophilia online tool in improving adherence to prophylactic treatment in haemophilia A and B patients in a 1-year prospective observational study. |
| Kulkarni | Use of telehealth in the delivery of comprehensive care for patients with haemophilia and other inherited bleeding disorders |
2018 | Review article providing an overview of types of telemedicine, technical aspects, its benefits and challenges and focusing on the applicability of this technology to persons with bleeding and other blood disorders. |
| Hay et al. | The Haemtrack home therapy reporting system: Design, implementation, strengths and weaknesses: A report from UK Haemophilia Centre Doctors Organisation |
2017 | Assessment of Haemtrack electronic home treatment diary for patients with inherited blood disorders. |
| Tarantino & Pindolia | Hemophilia management via data collection and reporting: initial findings from the Comprehensive Care Sustainability Collaborative |
2017 | Review of programme aiming to develop a framework for quality improvement pilot programmes that can be replicated across the United States between payers and haemophilia treatment centres (HTC) to facilitate cost-effective haemophilia management by integrating the HTC comprehensive care model. |
| Jacobson & Hooke | Telehealth videoconferencing for children with hemophilia and their families: A clinical project |
2015 | Clinical project evaluating the feasibility of using telehealth videoconferencing in children with severe haemophilia in the home setting. |
Best practices for haemophilia care, based on a survey of healthcare professionals in the United Kingdom and Canada [21]
| AREA | HIGHLIGHTED BEST PRACTICE OR POLICY |
|---|---|
|
Centrality of a non-hierarchical team approach Sharing different expertise and experience leads to better outcome Dedicated physiotherapists with prominent role Major impact on musculoskeletal (MSK) outcomes All patients known to all MDT members Regular, formal MDT meetings outside the clinic Having a data coordinator as core MDT member Having one experienced, highly trained person (e.g., nurse) whose time is devoted fully to the programme and who can function independently |
|
|
Standardised care and protocols/pathways Aggressive follow-up; maintain high expectations for diary-keeping Critical for joint management and self-treatment Electronic treatment plan (especially for emergencies) Robust pain management strategies Collaborate with other specialties and other centres Close links and collaboration between adult and paediatric services/centres Facilitates smooth, effective transitioning |
|
|
Video conferencing for remote care and training Complements (rather than replaces) traditional community services Using text, email, and phone to liaise with patients in the initial stages of an acute bleed Use of patient forums Establishment of a genetic database |
|
|
Preventative consultations Involvement of orthopaedic surgeons with specialised knowledge of specific joints Close links with radiology |