title: NHF-McMaster Guideline on Care Models for Haemophilia Management.
abstract: This guideline was developed to identify evidence-based best practices in haemophilia care delivery, and discuss the range of care providers and services that are most important to optimize outcomes for persons with haemophilia (PWH) across the United States. The guideline was developed following specific methods described in detail in this supplement and based on the GRADE (Grading of Recommendations, Assessment, Development and Evaluation approach). Direct evidence from published literature and the haemophilia community, as well as indirect evidence from other chronic diseases, were reviewed, synthesized and applied to create evidence-based recommendations. The Guideline panel suggests that the integrated care model be used over non-integrated care models for PWH (conditional recommendation, moderate certainty in the evidence). For PWH with inhibitors and those at high risk for inhibitor development, the same recommendation was graded as strong, with moderate certainty in the evidence. The panel suggests that a haematologist, a specialized haemophilia nurse, a physical therapist, a social worker and round-the-clock access to a specialized coagulation laboratory be part of the integrated care team, over an integrated care team that does not include all of these components (conditional recommendation, very low certainty in the evidence). Based on available evidence, the integrated model of care in its current structure, is suggested for optimal care of PWH. There is a need for further appropriately designed studies that address unanswered questions about specific outcomes and the optimal structure of the integrated care delivery model in haemophilia.
authors.affiliation: Department of Medicine, McMaster University, Hamilton, ON, Canada.|Department of Pathology and Molecular Medicine, McMaster University, Hamilton, ON, Canada.|McMaster Centre for Transfusion Research McMaster University, Hamilton, ON, Canada.
authors.forename: M
authors.initials: M
authors.lastname: Pai
authors.affiliation: Department of Medicine, University of North Carolina, Chapel Hill, NC, USA.
authors.forename: N S
authors.initials: NS
authors.lastname: Key
authors.affiliation: Institute for Policy Advancement Ltd., Washington, DC, USA.
authors.forename: M
authors.initials: M
authors.lastname: Skinner
authors.affiliation: Factor VIII Computing, Berkeley, CA, USA.
authors.forename: R
authors.initials: R
authors.lastname: Curtis
authors.affiliation: National Hemophilia Foundation, New York, NY, USA.
authors.forename: M
authors.initials: M
authors.lastname: Feinstein
authors.affiliation: Georgetown University, Washington, DC, USA.
authors.forename: C
authors.initials: C
authors.lastname: Kessler
authors.affiliation: McMaster Centre for Transfusion Research McMaster University, Hamilton, ON, Canada.
authors.forename: S J
authors.initials: SJ
authors.lastname: Lane
authors.affiliation: Department of Infection, Immunity and Cardiovascular Disease, University of Sheffield, Sheffield, UK.
authors.forename: M
authors.initials: M
authors.lastname: Makris
authors.affiliation: National Hemophilia Foundation, New York, NY, USA.
authors.forename: E
authors.initials: E
authors.lastname: Riker
authors.affiliation: Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, ON, Canada.
authors.forename: N
authors.initials: N
authors.lastname: Santesso
authors.affiliation: Centers for Disease Control and Prevention, National Center for Birth Defects and Developmental Disabilities, Division of Blood Disorders, Atlanta, GA, USA.
authors.forename: J M
authors.initials: JM
authors.lastname: Soucie
authors.affiliation: Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, ON, Canada.
authors.forename: C H T
authors.initials: CH
authors.lastname: Yeung
authors.affiliation: Department of Medicine, McMaster University, Hamilton, ON, Canada.|Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, ON, Canada.
authors.forename: A
authors.identifier: http://orcid.org/0000-0002-3331-8766
authors.initials: A
authors.lastname: Iorio
authors.affiliation: Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, ON, Canada.
authors.forename: H J
authors.initials: HJ
authors.lastname: Schünemann
mesh_terms: D001323:Autoantibodies / Q000097:blood; D003695:Delivery of Health Care / Q000379:methods / Q000458:organization & administration / Q000592:standards; D019468:Disease Management; D019317:Evidence-Based Medicine; D006467:Hemophilia A / Q000473:pathology / Q000628:therapy*; D006801:Humans; D012106:Research; D012307:Risk Factors
chemical_list: D001323:Autoantibodies
keywords: care model; delivery of health care; guideline; haemophilia; health care team; integrated care