title: Structure and process measures of quality of care in adult congenital heart disease patients: a pan-Canadian study.
abstract: BACKGROUND
  There are more adults than children with congenital heart disease. Of over 96,000 ACHD patients in Canada, approximately 50% require ongoing expert care. In spite of published recommendations, data on the quality of care for ACHD patients are lacking.
  
  
  METHODS
  Survey methodology targeted all Canadian Adult Congenital Heart (CACH) network affiliated ACHD centers. Clinics were asked to prospectively collect outpatient and procedural volumes for 2007. In 2008, centers were surveyed regarding infrastructure, staffing, patient volumes and waiting times.
  
  
  RESULTS
  All 15 CACH network registered centers responded. The total number of patients followed in ACHD clinics was 21,879 (median per clinic=1132 (IQR: 585, 1816)). Of the total 80 adult and pediatric cardiologists affiliated to an ACHD clinic, only 27% had received formal ACHD training. Waiting times for non-urgent consultations were 4 ± 2 months, and 4 ± 3 months for percutaneous and surgical procedures. These were beyond Canadian recommended targets at 11 sites (73%) for non-urgent consultations, at 8 sites (53%) for percutaneous interventions and 13 sites (87%) for surgery.
  
  
  CONCLUSIONS
  Of a minimum number of 96,000 ACHD patients in Canada, only 21,879 were being regularly followed in 2007. At most sites waiting times for ACHD services were beyond Canadian recommended targets. In spite of universal health care access, published guidelines for ACHD patient structure and process measures of health care quality are not being met.
authors.affiliation: University of Ottawa Heart Institute, Canada. lbeauchesne@ottawaheart.ca
authors.forename: Luc M
authors.initials: LM
authors.lastname: Beauchesne
authors.forename: Judith
authors.initials: J
authors.lastname: Therrien
authors.forename: Nanette
authors.initials: N
authors.lastname: Alvarez
authors.forename: Lynn
authors.initials: L
authors.lastname: Bergin
authors.forename: Gary
authors.initials: G
authors.lastname: Burggraf
authors.forename: Philippe
authors.initials: P
authors.lastname: Chetaille
authors.forename: Elaine
authors.initials: E
authors.lastname: Gordon
authors.forename: Catherine M
authors.initials: CM
authors.lastname: Kells
authors.forename: Marla
authors.initials: M
authors.lastname: Kiess
authors.forename: Lise-Andrée
authors.initials: LA
authors.lastname: Mercier
authors.forename: Erwin N
authors.initials: EN
authors.lastname: Oechslin
authors.forename: Jeffrey
authors.initials: J
authors.lastname: Stein
authors.forename: James W
authors.initials: JW
authors.lastname: Tam
authors.forename: Dylan
authors.initials: D
authors.lastname: Taylor
authors.forename: Anne
authors.initials: A
authors.lastname: Williams
authors.forename: Paul
authors.initials: P
authors.lastname: Khairy
authors.forename: Andrew S
authors.initials: AS
authors.lastname: Mackie
authors.forename: Candice K
authors.initials: CK
authors.lastname: Silversides
authors.forename: Ariane J
authors.initials: AJ
authors.lastname: Marelli
mesh_terms: D002170:Canada / Q000453:epidemiology; D003625:Data Collection / Q000379:methods; D005500:Follow-Up Studies; D006330:Heart Defects, Congenital / Q000453:epidemiology* / Q000628:therapy*; D006801:Humans; D017064:Process Assessment, Health Care / Q000592:standards*; D011446:Prospective Studies; D011787:Quality of Health Care / Q000592:standards*; D014850:Waiting Lists