title: Advance Care Planning in Adults with Congenital Heart Disease: A Patient Priority.
abstract: BACKGROUND
  Adult congenital heart disease (ACHD) patients with moderate or great defect complexity are at risk for premature death. Although early engagement in advance care planning (ACP) is recommended, previous research suggests that it seldom occurs.
  
  
  METHODS
  This study investigated ACHD patient preferences for ACP and factors that impact preferences. ACHD patients completed an ACP preferences questionnaire, the Hospital Anxiety and Depression Scale and a measure of attachment styles.
  
  
  RESULTS
  Of 152 ACHD patients (median age 33years, 50% female), 13% reported previous ACP discussions with providers and 21% had completed advance directives. On a 0-10 scale, the median rating for the importance of discussing ACP with providers was 7; 18years was identified as the most appropriate age to initiate this dialogue. Higher ratings for the importance of discussing ACP with providers was observed in patients who were female (p=0.03), had lower disease complexity (p=0.03), and had elevated anxiety symptoms (p=0.001); elevated anxiety remained significant in a multivariable model. Interest in receiving information about life expectancy (61% overall) was greater among patients with lower disease complexity (p=0.04) and a history of ≥2 cardiac surgeries (p=0.01); disease complexity remained significant in a multivariable model.
  
  
  CONCLUSIONS
  As a group, ACHD patients value the opportunity for ACP discussions and prefer earlier communication. Although some clinicians might avoid ACP discussions in patients who are generally more anxious or have less complex CHD, such avoidance does not appear to be warranted.
authors.affiliation: Philadelphia Adult Congenital Heart Center, joint program of Hospital of the University of Pennsylvania and The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Lisa X
authors.initials: LX
authors.lastname: Deng
authors.affiliation: Philadelphia Adult Congenital Heart Center, joint program of Hospital of the University of Pennsylvania and The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Lacey P
authors.initials: LP
authors.lastname: Gleason
authors.affiliation: Knight Cardiovascular Institute, Oregon Health & Science University, Portland, OR, USA.
authors.forename: Abigail M
authors.initials: AM
authors.lastname: Khan
authors.affiliation: Philadelphia Adult Congenital Heart Center, joint program of Hospital of the University of Pennsylvania and The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: David
authors.initials: D
authors.lastname: Drajpuch
authors.affiliation: Philadelphia Adult Congenital Heart Center, joint program of Hospital of the University of Pennsylvania and The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Stephanie
authors.initials: S
authors.lastname: Fuller
authors.affiliation: Philadelphia Adult Congenital Heart Center, joint program of Hospital of the University of Pennsylvania and The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Leah A
authors.initials: LA
authors.lastname: Goldberg
authors.affiliation: Philadelphia Adult Congenital Heart Center, joint program of Hospital of the University of Pennsylvania and The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Christopher E
authors.initials: CE
authors.lastname: Mascio
authors.affiliation: Philadelphia Adult Congenital Heart Center, joint program of Hospital of the University of Pennsylvania and The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Sara L
authors.initials: SL
authors.lastname: Partington
authors.affiliation: Philadelphia Adult Congenital Heart Center, joint program of Hospital of the University of Pennsylvania and The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Lynda
authors.initials: L
authors.lastname: Tobin
authors.affiliation: Philadelphia Adult Congenital Heart Center, joint program of Hospital of the University of Pennsylvania and The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
authors.forename: Yuli Y
authors.initials: YY
authors.lastname: Kim
authors.affiliation: Knight Cardiovascular Institute, Oregon Health & Science University, Portland, OR, USA. Electronic address: kovacs@ohsu.edu.
authors.forename: Adrienne H
authors.initials: AH
authors.lastname: Kovacs
mesh_terms: D000328:Adult; D032722:Advance Care Planning / Q000458:organization & administration*; D000368:Aged; D001007:Anxiety / Q000523:psychology; D001291:Attitude of Health Personnel; D003657:Decision Making; D005260:Female; D019538:Health Care Surveys; D007722:Health Knowledge, Attitudes, Practice; D006330:Heart Defects, Congenital / Q000523:psychology / Q000628:therapy*; D006801:Humans; D008017:Life Expectancy; D008297:Male; D008875:Middle Aged; D010817:Physician-Patient Relations; D011379:Prognosis; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Adult congenital heart disease; Advance care planning; Anxiety