title: Referral patterns and perceived barriers to adult congenital heart disease care: results of a survey of U.S. pediatric cardiologists.
abstract: OBJECTIVE
  This study sought to elucidate referral patterns and barriers to adult congenital heart disease (ACHD) care, as perceived by pediatric cardiologists (PCs).
  
  
  BACKGROUND
  Management guidelines recommend that care of adults with moderate/complex congenital heart disease be guided by clinicians trained in ACHD.
  
  
  METHODS
  A cross-sectional survey was distributed to randomly selected U.S. PCs.
  
  
  RESULTS
  Overall response rate was 48% (291 of 610); 88% (257 of 291) of respondents met inclusion criteria (outpatient care to patients >11 years of age). Participants were in practice for 18.2 ± 10.7 years; 70% were male, and 72% were affiliated with an academic institution; 79% stated that they provide care to adults (>18 years). The most commonly perceived patient characteristic prompting referral to ACHD care was adult comorbidities (83%). The most perceived barrier to ACHD care was emotional attachment of parents and patients to the PC (87% and 86%, respectively). Clinician attachment to the patient/family was indicated as a barrier by 70% of PCs and was more commonly identified by responders with an academic institutional affiliation (p = 0.001). A lack of qualified ACHD care providers was noted by 76% of PCs. Those affiliated with an academic institution were less likely to identify this barrier to ACHD care (p = 0.002).
  
  
  CONCLUSIONS
  Most PC respondents in the United States provide care to ACHD patients. Common triggers that prompt referral and perceived barriers to ACHD care were identified. These findings might assist ACHD programs in developing strategies to identify and retain patients, improve collaborative care, and address emotional needs during the transition and transfer process.
authors.affiliation: Department of Pediatrics, Lucile Packard Children's Hospital at Stanford, Palo Alto, CA 94304, USA. Smf14@stanford.edu
authors.forename: Susan M
authors.initials: SM
authors.lastname: Fernandes
authors.forename: Paul
authors.initials: P
authors.lastname: Khairy
authors.forename: Laurie
authors.initials: L
authors.lastname: Fishman
authors.forename: Patrice
authors.initials: P
authors.lastname: Melvin
authors.forename: Joanne
authors.initials: J
authors.lastname: O'Sullivan-Oliveira
authors.forename: Gregory S
authors.initials: GS
authors.lastname: Sawicki
authors.forename: Sonja
authors.initials: S
authors.lastname: Ziniel
authors.forename: Petar
authors.initials: P
authors.lastname: Breitinger
authors.forename: Roberta
authors.initials: R
authors.lastname: Williams
authors.forename: Masato
authors.initials: M
authors.lastname: Takahashi
authors.forename: Michael J
authors.initials: MJ
authors.lastname: Landzberg
mesh_terms: D000328:Adult; D002309:Cardiology; D003266:Continuity of Patient Care / Q000458:organization & administration*; D003430:Cross-Sectional Studies; D005260:Female; D006330:Heart Defects, Congenital / Q000628:therapy*; D006801:Humans; D008297:Male; D010372:Pediatrics; D010820:Physicians / Q000592:standards*; D012017:Referral and Consultation; D011795:Surveys and Questionnaires; D014481:United States; D055815:Young Adult