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Rationale for individualizing haemophilia care.

Benny Sørensen1, Günter Auerswald, Gary Benson

  • 1aHaemostasis Research Unit, Centre for Haemophilia and Thrombosis, Guy's and St Thomas' NHS Foundation Trust and King's College London, School of Medicine, London, UK bKlinikum Bremen-Mitte, Professor Hess Children's Hospital, Bremen, Germany cNorthern Ireland Haemophilia Comprehensive Care Centre, Belfast, UK dClinic of Haematology, Clinical Centre of Serbia, Medical Faculty, University of Belgrade, Belgrade, Serbia eGartenstr 14, Zürich, Switzerland fHemophilia Care Center, Bicêtre AP-HP Hospital and Faculté de Médecine Paris XI, Paris, France gAgency for Hemophilia - Reference Center for Inherited Bleeding Disorders of Tuscany, Department of Emergency and Reception, Azienda Ospedaliero Universitaria Careggi, Florence, Italy hDepartment of Psychobiology and Health, Faculty of Psychology, Universidad Autónoma de Madrid, Madrid, Spain iInstitute of Hematology and Blood Transfusion, Prague, Czech Republic jAngelo Bianchi Bonomi Hemophilia Center, IRCCS Cà Granda Foundation, Maggiore Hospital Policlinico, Milan, Italy kNational Haemophilia and Thrombophilia Centre, Division of Haematology, Department of Internal Medicine, University Hospital Centre Rebro, Zagreb, Croatia lLund University, Department of Paediatrics and Malmö Centre for Thrombosis and Haemostasis, Skåne University Hospital, Malmö, Sweden.

Blood Coagulation & Fibrinolysis : an International Journal in Haemostasis and Thrombosis
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Summary

Haemophilia treatment needs personalization beyond disease severity. Individualized care, considering unique patient factors and tailored prophylaxis or on-demand therapy, is crucial for optimal outcomes.

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Area of Science:

  • Hematology
  • Genetics
  • Clinical Medicine

Background:

  • Haemophilia A and B exhibit diverse clinical phenotypes, challenging traditional severity-based treatment guidelines.
  • A 'one-size-fits-all' approach to haemophilia management is inadequate for achieving optimal patient outcomes.

Purpose of the Study:

  • To identify knowledge gaps in understanding the relationship between bleeding phenotype and various patient factors.
  • To discuss individualized treatment strategies for haemophilia, including prophylaxis and on-demand therapy.
  • To explore the practical and economic implications of personalized haemophilia care.

Main Methods:

  • Literature review and expert consensus.
  • Analysis of relationships between bleeding phenotype, joint health, genetics, laboratory parameters, quality of life, and pain management.
  • Discussion of prophylaxis, inhibitor development, and on-demand treatment.

Main Results:

  • Disease severity alone is insufficient for guiding haemophilia treatment.
  • Individualized care plans are necessary, considering unique patient profiles and risk factors.
  • Prophylaxis is a potential standard, but on-demand treatment may suit some adults with milder phenotypes.

Conclusions:

  • Comprehensive haemophilia treatment must be individualized for all patients, including those with mild/moderate disease and carriers.
  • Tailoring treatment (prophylaxis or on-demand) to personal needs and clinical profiles is essential.
  • Individualized approaches are required to manage unique risk factors and improve patient behavior, with ongoing research into methodologies and health economics.