title: Penny wise, pound foolish: an assessment of Canadian Hemophilia/inherited bleeding disorder comprehensive care program services and resources.
abstract: BACKGROUND
  A network of 25 haemophilia/inherited bleeding disorder comprehensive care centres was established in Canada in the 1970s and 1980s. In 2007, standards of care, focused on the structural and resource requirements necessary to effectively provide optimal care, were adopted.
  
  
  OBJECTIVE
  Assess how human and physical resources affect centres' capacity to attain standards of care.
  
  
  METHODS
  The Canadian Hemophilia Society (CHS), with the support of the Association of Hemophilia Clinic Directors of Canada (AHCDC), undertook the assessment. Health care providers were interviewed in person by lay CHS volunteers and staff. A comprehensive patient satisfaction survey was mailed to a representative cross-section of patients/caregivers.
  
  
  RESULTS
  The CHS observed that, despite competent and dedicated staff, many of the programmes are experiencing serious resource deficiencies. Twenty-three of the 25 programmes lack resources in one or more of the following disciplines: haematology, nursing, physiotherapy, social work and clerical/data entry. In nine of the 25 programmes, no resources are allocated to certain core disciplines, notably physiotherapy and social work. Key standards of care, including regular health assessments and close monitoring of home infusion with factor concentrates, are not always respected. Nevertheless, a high level of satisfaction was observed among patients and their caregivers. The study also discovered that clotting factor concentrates constitute 90-95% of the total cost of care while all other aspects of care delivery represent only 5-10%.
  
  
  CONCLUSIONS
  Under-funding of programmes and suboptimal monitoring of valuable clotting factor concentrate utilization and reporting are both 'penny-wise' and 'pound-foolish'. A formal accreditation process is needed.
authors.affiliation: Canadian Hemophilia Society, Montreal, QC, Canada.
authors.forename: D
authors.initials: D
authors.lastname: Page
authors.affiliation: St. Michael's Hospital, Toronto, ON, Canada.
authors.forename: S
authors.initials: S
authors.lastname: Crymble
authors.affiliation: Canadian Hemophilia Society, Montreal, QC, Canada.
authors.forename: K
authors.initials: K
authors.lastname: Lawday
authors.affiliation: Canadian Hemophilia Society, Montreal, QC, Canada.
authors.forename: M
authors.initials: M
authors.lastname: Long
authors.affiliation: Manitoba Bleeding Disorders Program, Winnipeg, MB, Canada.
authors.forename: J
authors.initials: J
authors.lastname: Stoffman
authors.affiliation: Hemophilia/Pediatric Thrombosis Program, Hamilton Health Sciences Corporation, Hamilton, ON, Canada.
authors.forename: L
authors.initials: L
authors.lastname: Waterhouse
authors.affiliation: Canadian Hemophilia Society, Montreal, QC, Canada.
authors.forename: P
authors.initials: P
authors.lastname: Wilton
mesh_terms: D002170:Canada; D017028:Caregivers / Q000523:psychology; D003191:Comprehensive Health Care / Q000458:organization & administration*; D003695:Delivery of Health Care / Q000592:standards; D006282:Health Personnel / Q000523:psychology*; D006467:Hemophilia A / Q000523:psychology* / Q000628:therapy; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D017060:Patient Satisfaction; D026741:Physical Therapy Modalities; D011795:Surveys and Questionnaires
keywords: assessment; centres; haemophilia; standards of care