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COMMUNICATION PREFERENCES FOR ADVANCE CARE PLANNING IN ADULTS WITH CONGENITAL HEART DISEASE
A549 JACC March 17, 2015 Volume 65, Issue 10S
Congenital Heart Disease Communication Preferences for Advance Care Planning in Adults with Congenital Heart Disease Poster Contributions Poster Hall B1 Sunday, March 15, 2015, 3:45 p.m.-4:30 p.m. Session Title: Thinking of the Whole Patient in Congenital Heart Disease Abstract Category: 10. Congenital Heart Disease: Adult Presentation Number: 1221-319 Authors: Lisa X. Deng, Lacey P. Gleason, Abigail May Khan, David Drajpuch, Stephanie Fuller, Leah A. Goldberg, Christopher E. Mascio, Sara L. Partington, Lynda Tobin, Yuli Y. Kim, Adrienne Kovacs, Philadelphia Adult Congenital Heart Center, Children’s Hospital of Philadelphia and Penn Medicine, Philadelphia, PA, USA, Toronto Congenital Cardiac Centre for Adults, Peter Munk Cardiac Centre, University of Toronto, Toronto, Canada Background: Adults with congenital heart disease (CHD) of moderate and great complexity are at risk for medical complications and premature death. While early discussion of advance care planning (ACP) is recommended, previous research suggests that it seldom occurs. The objective of this study was to investigate whether patient characteristics impact preferences for ACP communication with health care providers.
Methods: Adults with CHD were prospectively enrolled from an outpatient clinic and completed a communication preferences survey and the Hospital Anxiety and Depression Scale. Clinical and demographic data were collected through retrospective chart review.
Results: A total of 152 adults with CHD were included in the study. The median age was 33 years, 50% were female and 84% had CHD of moderate or great complexity. Only 13% of patients reported previous ACP discussions with providers and 21% had completed advance directives. On a scale of 0 (not important) to 10 (extremely important), patients rated ACP discussions as highly important (median rating = 7). Most patients (78%) preferred ACP discussions to be initiated before the diagnosis of a life threatening illness and 18 years was identified as the most appropriate age to have this discussion. Sixty-five percent of patients believed that they were likely to have a shorter life expectancy than individuals without CHD, and 61% favored receiving specific information about life expectancy. Patients with greater defect complexity were less interested in learning information about life expectancy (great complexity lesions 55%; moderate 68%; simple 86%, p = 0.04) and rated ACP discussions as less important (great 5.5; moderate 7.0; simple 8.0, p = 0.03). Nearly half of the patients (46%) reported elevated symptoms of anxiety. Patients with elevated anxiety scores reported greater interest in discussing ACP with their providers (8.0 vs. 6.0, p=0.001).
Conclusion: Adults with CHD are receptive to ACP discussions and desire early communication with their providers. Patient-specific clinical characteristics such as disease complexity and anxiety inform ACP communication preferences and may help clinicians tailor these discussions.
Congenital Heart Disease Communication Preferences for Advance Care Planning in Adults with Congenital Heart Disease Poster Contributions Poster Hall B1 Sunday, March 15, 2015, 3:45 p.m.-4:30 p.m. Session Title: Thinking of the Whole Patient in Congenital Heart Disease Abstract Category: 10. Congenital Heart Disease: Adult Presentation Number: 1221-319 Authors: Lisa X. Deng, Lacey P. Gleason, Abigail May Khan, David Drajpuch, Stephanie Fuller, Leah A. Goldberg, Christopher E. Mascio, Sara L. Partington, Lynda Tobin, Yuli Y. Kim, Adrienne Kovacs, Philadelphia Adult Congenital Heart Center, Children’s Hospital of Philadelphia and Penn Medicine, Philadelphia, PA, USA, Toronto Congenital Cardiac Centre for Adults, Peter Munk Cardiac Centre, University of Toronto, Toronto, Canada Background: Adults with congenital heart disease (CHD) of moderate and great complexity are at risk for medical complications and premature death. While early discussion of advance care planning (ACP) is recommended, previous research suggests that it seldom occurs. The objective of this study was to investigate whether patient characteristics impact preferences for ACP communication with health care providers.
Methods: Adults with CHD were prospectively enrolled from an outpatient clinic and completed a communication preferences survey and the Hospital Anxiety and Depression Scale. Clinical and demographic data were collected through retrospective chart review.
Results: A total of 152 adults with CHD were included in the study. The median age was 33 years, 50% were female and 84% had CHD of moderate or great complexity. Only 13% of patients reported previous ACP discussions with providers and 21% had completed advance directives. On a scale of 0 (not important) to 10 (extremely important), patients rated ACP discussions as highly important (median rating = 7). Most patients (78%) preferred ACP discussions to be initiated before the diagnosis of a life threatening illness and 18 years was identified as the most appropriate age to have this discussion. Sixty-five percent of patients believed that they were likely to have a shorter life expectancy than individuals without CHD, and 61% favored receiving specific information about life expectancy. Patients with greater defect complexity were less interested in learning information about life expectancy (great complexity lesions 55%; moderate 68%; simple 86%, p = 0.04) and rated ACP discussions as less important (great 5.5; moderate 7.0; simple 8.0, p = 0.03). Nearly half of the patients (46%) reported elevated symptoms of anxiety. Patients with elevated anxiety scores reported greater interest in discussing ACP with their providers (8.0 vs. 6.0, p=0.001).
Conclusion: Adults with CHD are receptive to ACP discussions and desire early communication with their providers. Patient-specific clinical characteristics such as disease complexity and anxiety inform ACP communication preferences and may help clinicians tailor these discussions.