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.
| Language | English (US) |
|---|---|
| Pages | 105-109 |
| Number of pages | 5 |
| Journal | International Journal of Cardiology |
| Volume | 231 |
| DOIs | |
| State | Published - Mar 15 2017 |
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Keywords
- Adult congenital heart disease
- Advance care planning
- Anxiety
ASJC Scopus subject areas
- Medicine(all)
- Cardiology and Cardiovascular Medicine
Cite this
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 journal › Article
}
TY - JOUR
T1 - Advance Care Planning in Adults with Congenital Heart Disease
T2 - International Journal of Cardiology
AU - Deng,Lisa X.
AU - Gleason,Lacey P.
AU - Khan,Abigail M.
AU - Drajpuch,David
AU - Fuller,Stephanie
AU - Goldberg,Leah A.
AU - Mascio,Christopher E.
AU - Partington,Sara L.
AU - Tobin,Lynda
AU - Kim,Yuli Y.
AU - Kovacs,Adrienne H.
PY - 2017/3/15
Y1 - 2017/3/15
N2 - 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.
AB - 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.
KW - Adult congenital heart disease
KW - Advance care planning
KW - Anxiety
UR - http://www.scopus.com/inward/record.url?scp=85009343208&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85009343208&partnerID=8YFLogxK
U2 - 10.1016/j.ijcard.2016.12.185
DO - 10.1016/j.ijcard.2016.12.185
M3 - Article
VL - 231
SP - 105
EP - 109
JO - International Journal of Cardiology
JF - International Journal of Cardiology
SN - 0167-5273
ER -