title: Understanding stakeholder important outcomes and perceptions of equity, acceptability and feasibility of a care model for haemophilia management in the US: a qualitative study.
abstract: BACKGROUND
  Care for persons with haemophilia (PWH) is most commonly delivered through the integrated care model used by Hemophilia Treatment Centers (HTCs). Although this model is widely accepted as the gold standard for the management of haemophilia; there is little evidence comparing different care models.
  
  
  OBJECTIVE
  We performed a qualitative study to gain insight into issues related to outcomes, acceptability, equity and feasibility of different care models operating in the US.
  
  
  METHODS
  We used a qualitative descriptive approach with semi-structured interviews. Purposive sampling was used to recruit individuals with experience providing or receiving care for haemophilia in the US through either an integrated care centre, a specialty pharmacy or homecare company, or by a specialist in a non-specialized centre. Persons with haemophilia, parents of PWH aged ≤18, healthcare providers, insurance company representatives and policy developers were invited to participate.
  
  
  CONCLUSIONS
  Twenty-nine interviews were conducted with participants representing 18 US states. Participants in the study sample had experience receiving or providing care predominantly within an HTC setting. Integrated care at HTCs was highly acceptable to participants, who appreciated the value of specialized, expert care in a multidisciplinary team setting. Equity and feasibility issues were primarily related to health insurance and funding limitations. Additional research is required to document the impact of care on health and psychosocial outcomes and identify effective ways to facilitate equitable access to haemophilia treatment and care.
authors.affiliation: McMaster Centre for Transfusion Medicine, Department of Medicine, McMaster University, Hamilton, ON, Canada.
authors.forename: S J
authors.initials: SJ
authors.lastname: Lane
authors.affiliation: McMaster Centre for Transfusion Medicine, Department of Medicine, McMaster University, Hamilton, ON, Canada.
authors.forename: N S
authors.initials: NS
authors.lastname: Sholapur
authors.affiliation: Department of Clinical Epidemiology & Biostatics, McMaster University, Hamilton, ON, Canada.
authors.forename: C H T
authors.initials: CH
authors.lastname: Yeung
authors.affiliation: Department of Clinical Epidemiology & Biostatics, McMaster University, Hamilton, ON, Canada.|Department of Medicine, McMaster University, Hamilton, ON, Canada.
authors.forename: A
authors.initials: A
authors.lastname: Iorio
authors.affiliation: McMaster Centre for Transfusion Medicine, Department of Medicine, McMaster University, Hamilton, ON, Canada.|Canadian Blood Services, Research and Development, Hamilton, ON, Canada.
authors.forename: N M
authors.initials: NM
authors.lastname: Heddle
authors.affiliation: Departments of Medicine and Laboratory Medicine, St. Michael's Hospital, Li Ka Shing Knowledge Institute, University of Toronto, Toronto, ON, Canada.
authors.forename: M
authors.initials: M
authors.lastname: Sholzberg
authors.affiliation: Department of Medicine, McMaster University, Hamilton, ON, Canada.|Department of Pathology and Molecular Medicine McMaster University, Hamilton, ON, Canada.
authors.forename: M
authors.initials: M
authors.lastname: Pai
mesh_terms: D003695:Delivery of Health Care / Q000592:standards*; D019468:Disease Management; D006282:Health Personnel; D006467:Hemophilia A / Q000628:therapy*; D006801:Humans; D007348:Insurance, Health; D007407:Interviews as Topic; D010342:Patient Acceptance of Health Care; D010465:Perception; D036301:Qualitative Research; D014481:United States
keywords: access to healthcare; comprehensive care; haemophilia; health equity; integrated care; qualitative research