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Common themes and challenges in hemophilia care: a multinational perspective |
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| Authors: | J Stoffman N G Andersson B Branchford K Batt R D’Oiron C Escuriola Ettingshausen |
| Institution: | 1. Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, Canada;2. Department for Thrombosis and Haemostasis Hematology, Sk?ne University Hospital, Scania, Sweden;3. School of Medicine Research Complex 1, University of Colorado, Aurora, CO, USA;4. Wake Forest Baptist University Medical Center, 1 Medical Center Blvd, Winston-Salem, NC, USA;5. Centre de Traitement de l’Hémophilie et Maladies Hémorragiques Constitutionnelles Rares, H?pitaux Universitaires Paris Sud - H?pital Bicêtre, Le Kremlin-Bicêtre Cedex, France;6. Haemophilia Centre Rhine Main – HZRM, M?rfelden-Walldorf, Germany |
| Abstract: | Objective: To identify ways that provision of hemophilia care can be maximized at the local level, irrespective of available resources or cultural or geographic challenges. Methods: The SHIELD group used its multinational experience to share examples of local initiatives that have been employed to deliver optimal hemophilia care. Results: The examples were reviewed and categorized into four key themes: guidelines and algorithms for delivery of care; collaboration with patients and allied groups for care and education; registries for the monitoring of treatment and outcomes and health care planning and delivery; and opportunities for personalization of care. These themes were then incorporated into a road map for collaborative care in hemophilia that reflected the contribution of best practice. Discussion: Differing healthcare reimbursement systems, budgetary constraints, and geographical and cultural factors make it difficult for any country to fully deliver ideal care for people with hemophilia. The SHIELD approach for collaborative care provides illustrative examples of how four key themes can be used to optimize hemophilia care in any setting. Abbreviations: AHCDC: Association of Hemophilia Clinic Directors of Canada; AICE: Italian Association of Hemophilia Centres; ATHN: American Thrombosis and Hemostasis Network; EAHAD: European Association for Haemophilia and Allied Disorders; EHC: European Hemophilia Consortium; FIX: Coagulation Factor IX; FVIII: Coagulation Factor VIII; HAL: Haemophilia Activity List; HJHS: Haemophilia Joint Health Score; HTC: Hemophilia Treatment Centre; HTCCNC: Hemophilia Treatment Centre Collaborative Network of China; MASAC: Medical and Scientific Advisory Council; MDT: Multidisciplinary team; NHD: National Haemophilia Database; NHF: National Hemophilia Foundation; PK: Pharmacokinetics; POCUS: Point of care ultrasound; PWH: People with haemophilia; SHIELD: Supporting Hemophilia through International Education, Learning and Development; WFH: World Federation of Hemophilia |
| Keywords: | Coagulation disorders hemophilia factor replacement therapy prophylaxis comprehensive care |