J Stoffman1, N G Andersson2, B Branchford3, K Batt4, R D'Oiron5, C Escuriola Ettingshausen6, D P Hart7, V Jiménez Yuste8, K Kavakli9, M E Mancuso10, K Nogami11, C Ramírez12, R Wu13. 1. a Department of Pediatrics and Child Health , University of Manitoba , Winnipeg , Canada. 2. b Department for Thrombosis and Haemostasis Hematology , Skåne University Hospital , Scania , Sweden. 3. c School of Medicine Research Complex 1 , University of Colorado , Aurora , CO , USA. 4. d Wake Forest Baptist University Medical Center, 1 Medical Center Blvd , Winston-Salem , NC , USA. 5. e Centre de Traitement de l'Hémophilie et Maladies Hémorragiques Constitutionnelles Rares , Hôpitaux Universitaires Paris Sud - Hôpital Bicêtre , Le Kremlin-Bicêtre Cedex , France. 6. f Haemophilia Centre Rhine Main - HZRM , Mörfelden-Walldorf , Germany. 7. g The Royal London Hospital Haemophilia Centre , Barts and The London School of Medicine & Dentistry , London , UK. 8. h Hospital Universitario La Paz - Hematology , Madrid , Spain. 9. i Department of Hematology , Ege University Children's Hospital , Izmir , Turkey. 10. j Angelo Bianchi Bonomi Haemophilia and Thrombosis Centre , University of Milan, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico and University of Milan , Milan , Italy. 11. k Department Pediatrics , Nara Medical University , Kashihara, Nara , Japan. 12. l Clinica Colsanitas , Fundación Universitaria Sanitas , Bogota , Colombia. 13. m Hemophilia Work Group, Hematology-Oncology Center , Beijing Children's Hospital affiliated to Capital Medical University , Beijing , People's Republic of China.
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.
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.