title: Prevalence and predictors of gaps in care among adult congenital heart disease patients: HEART-ACHD (The Health, Education, and Access Research Trial).
abstract: OBJECTIVE
  The goal of this project was to quantify the prevalence of gaps in cardiology care, identify predictors of gaps, and assess barriers to care among adult congenital heart disease (adult CHD) patients.
  
  
  BACKGROUND
  Adult CHD patients risk interruptions in care that are associated with undesired outcomes.
  
  
  METHODS
  Patients (18 years of age and older) with their first presentation to an adult CHD clinic completed a survey regarding gaps in, and barriers to, care.
  
  
  RESULTS
  Among 12 adult CHD centers, 922 subjects (54% female) were recruited. A >3-year gap in cardiology care was identified in 42%, with 8% having gaps longer than a decade. Mean age at the first gap was 19.9 years. The majority of respondents had more than high school education and knew their heart condition. The most common reasons for gaps included feeling well, being unaware that follow-up was required, and complete absence from medical care. Disease complexity was predictive of a gap in care with 59% of mild, 42% of moderate, and 26% of severe disease subjects reporting gaps (p < 0.0001). Clinic location significantly predicted gaps (p < 0.0001), whereas sex, race, and education level did not. Common reasons for returning to care were new symptoms, referral from provider, and desire to prevent problems.
  
  
  CONCLUSIONS
  Adult CHD patients have gaps in cardiology care; the first lapse commonly occurred at age ∼19 years, a time when transition to adult services is contemplated. Gaps were more common among subjects with mild and moderate diagnoses and at particular locations. These results provide a framework for developing strategies to decrease gaps and address barriers to care in the adult CHD population.
authors.affiliation: Department of Cardiology, Boston Children's Hospital and Department of Pediatrics, Harvard Medical School, Boston, Massachusetts 02115, USA. michelle.gurvitz@cardio.chboston.org
authors.forename: Michelle
authors.initials: M
authors.lastname: Gurvitz
authors.forename: Anne Marie
authors.initials: AM
authors.lastname: Valente
authors.forename: Craig
authors.initials: C
authors.lastname: Broberg
authors.forename: Stephen
authors.initials: S
authors.lastname: Cook
authors.forename: Karen
authors.initials: K
authors.lastname: Stout
authors.forename: Joseph
authors.initials: J
authors.lastname: Kay
authors.forename: Jennifer
authors.initials: J
authors.lastname: Ting
authors.forename: Karen
authors.initials: K
authors.lastname: Kuehl
authors.forename: Michael
authors.initials: M
authors.lastname: Earing
authors.forename: Gary
authors.initials: G
authors.lastname: Webb
authors.forename: Linda
authors.initials: L
authors.lastname: Houser
authors.forename: Alexander
authors.initials: A
authors.lastname: Opotowsky
authors.forename: Amy
authors.initials: A
authors.lastname: Harmon
authors.forename: Dionne
authors.initials: D
authors.lastname: Graham
authors.forename: Paul
authors.initials: P
authors.lastname: Khairy
authors.forename: Ann
authors.initials: A
authors.lastname: Gianola
authors.forename: Amy
authors.initials: A
authors.lastname: Verstappen
authors.forename: Michael
authors.initials: M
authors.lastname: Landzberg
mesh_terms: D000328:Adult; D002300:Cardiac Care Facilities; D003266:Continuity of Patient Care / Q000458:organization & administration*; D003430:Cross-Sectional Studies; D005260:Female; D005500:Follow-Up Studies; D006330:Heart Defects, Congenital / Q000628:therapy*; D006801:Humans; D008297:Male; D010353:Patient Education as Topic / Q000592:standards*; D015995:Prevalence; D011446:Prospective Studies; D011795:Surveys and Questionnaires; D014481:United States; D055815:Young Adult
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