Background: The American College of Cardiology/American Heart Association guidelines for the management of adult congenital heart disease (ACHD) patients recommend that all ACHD patients complete an advance directive (AD) at a time when they are not acutely ill or hospitalized, so that they can communicate their wishes thoughtfully in a less stressful setting. Like ACHD patients, adults with congenital or pediatric heart disease with cardiomyopathy, heart failure (HF), and/or heart transplantation face substantial morbidity and mortality and should be engaged in advanced care planning (ACP) to complete ADs expressing their wishes for medical and palliative care. Methods: We developed an interdisciplinary quality improvement (QI) initiative between the cardiology and palliative care services to improve outpatient ACP for adults followed in the HF and transplant clinic. Our specific aim was that 50% of adults with congenital or pediatric heart disease seen in the HF and transplant clinic per month would have a documented AD by 1 year. Our outcome measure was percent of adults seen in the HF and transplant clinic per month with documented AD (goal 50%). Our process measure was percent of adults seen in the HF and transplant clinic per month with a documented ACP discussion (goal 100%). We completed 5 series of PDSA cycles as outlined below. We completed quarterly chart reviews and incorporated feedback from the providers conducting ACP discussions to direct subsequent interventions. Results: Patients >18 years of age at time of visit seen in the HF and transplant clinic were included in analysis. New patient consultations and patients with a history of resolved cardiomyopathy were excluded. For patients seen multiple times per month, only the last visit in the month was included. At baseline, 0 of 10 adults seen in February 2016 had a documented ACP discussion or AD. Fifty-eight adults (mean age 20.42 ± 2.06 years) were seen from March 2016 to February 2017 for a total of 130 visits. Results are shown in the figures below. In the final month of our time frame, we nearly reached our goals with 75% of adult encounters with a documented ACP discussion and 42% with a documented AD. Conclusions: A multidisciplinary QI project improved the percentage of documented ADs in adults seen in the HF and transplant clinic at a tertiary children’s hospital. Over 50% of patients who were engaged in an ACP discussion completed an AD, suggesting that if we had successfully discussed ACP with all adult patients, we would have met our 50% AD goal. Our next step is to expand the program to other cardiology subspecialty clinics within our heart center. We hope this study will encourage members of the pediatric subspecialty community to empower their adult patients to complete ADs.
Integrating Advance Care Planning into Standard Outpatient Care for Adults with Congenital or Pediatric Heart Disease Followed in a Heart Failure and Transplant Clinic at a Tertiary Children’s Hospital
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Lindsay A. Edwards, Christine Bui, Antonio G. Cabrera, Jill Ann Jarrell; Integrating Advance Care Planning into Standard Outpatient Care for Adults with Congenital or Pediatric Heart Disease Followed in a Heart Failure and Transplant Clinic at a Tertiary Children’s Hospital. Pediatrics May 2018; 142 (1_MeetingAbstract): 650. 10.1542/peds.142.1MA7.650
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