Advance Care Planning in Adults with Congenital Heart Disease: A Patient Priority

Lisa X. Deng, Lacey P. Gleason, Abigail M. Khan, David Drajpuch, Stephanie Fuller, Leah A. Goldberg, Christopher E. Mascio, Sara L. Partington, Lynda Tobin, Yuli Y. Kim, Adrienne H. Kovacs

Research output: Contribution to journalArticle

  • 3 Citations

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 33 years, 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; 18 years 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.

LanguageEnglish (US)
Pages105-109
Number of pages5
JournalInternational Journal of Cardiology
Volume231
DOIs
StatePublished - Mar 15 2017

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Advance Care Planning
Heart Diseases
Anxiety
Advance Directives
Premature Mortality
Patient Preference
Life Expectancy
Thoracic Surgery
Communication
Depression

Keywords

  • Adult congenital heart disease
  • Advance care planning
  • Anxiety

ASJC Scopus subject areas

  • Medicine(all)
  • Cardiology and Cardiovascular Medicine

Cite this

Deng, L. X., Gleason, L. P., Khan, A. M., Drajpuch, D., Fuller, S., Goldberg, L. A., ... Kovacs, A. H. (2017). Advance Care Planning in Adults with Congenital Heart Disease: A Patient Priority. International Journal of Cardiology, 231, 105-109. DOI: 10.1016/j.ijcard.2016.12.185

Advance Care Planning in Adults with Congenital Heart Disease : A Patient Priority. / Deng, Lisa X.; Gleason, Lacey P.; Khan, Abigail M.; Drajpuch, David; Fuller, Stephanie; Goldberg, Leah A.; Mascio, Christopher E.; Partington, Sara L.; Tobin, Lynda; Kim, Yuli Y.; Kovacs, Adrienne H.

In: International Journal of Cardiology, Vol. 231, 15.03.2017, p. 105-109.

Research output: Contribution to journalArticle

Deng, LX, Gleason, LP, Khan, AM, Drajpuch, D, Fuller, S, Goldberg, LA, Mascio, CE, Partington, SL, Tobin, L, Kim, YY & Kovacs, AH 2017, 'Advance Care Planning in Adults with Congenital Heart Disease: A Patient Priority' International Journal of Cardiology, vol. 231, pp. 105-109. DOI: 10.1016/j.ijcard.2016.12.185
Deng LX, Gleason LP, Khan AM, Drajpuch D, Fuller S, Goldberg LA et al. Advance Care Planning in Adults with Congenital Heart Disease: A Patient Priority. International Journal of Cardiology. 2017 Mar 15;231:105-109. Available from, DOI: 10.1016/j.ijcard.2016.12.185
Deng, Lisa X. ; Gleason, Lacey P. ; Khan, Abigail M. ; Drajpuch, David ; Fuller, Stephanie ; Goldberg, Leah A. ; Mascio, Christopher E. ; Partington, Sara L. ; Tobin, Lynda ; Kim, Yuli Y. ; Kovacs, Adrienne H./ Advance Care Planning in Adults with Congenital Heart Disease : A Patient Priority. In: International Journal of Cardiology. 2017 ; Vol. 231. pp. 105-109
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