Hospital resource utilization and presence of advance directives at the end of life for adults with congenital heart disease

Steiner, Jill M.; Kirkpatrick, James N.; Heckbert, Susan R.; Sibley, James; Fausto, James A.; Engelberg, Ruth A.; Curtis, J. Randall

doi:10.1111/chd.12638

Cited by 24 publications

(22 citation statements)

References 32 publications

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“… 4 , 10 , 33 , 34 Future studies are needed to develop specific pathways to optimize HF care in these patients such that comprehensive management is provided at every HF stage. 35 , 36 …”

Section: Discussionmentioning

confidence: 99%

Outcomes and healthcare resource utilization in adult congenital heart disease patients with heart failure

et al. 2021

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Aims While heart failure (HF) is a leading cause of death in adults with congenital heart disease (ACHD), few studies report contemporary outcomes after the first HF hospitalization. We examined outcomes of ACHD patients newly admitted for HF compared with ACHD patients without HF and the general HF population without ACHD. Methods and results Using population databases from a single-payer health system from 1994 to 2018, ACHD patients newly admitted for HF were matched 1:1 to ACHD patients without HF (n = 4030 matched pairs). Similarly, ACHD patients newly admitted for HF were matched 1:1 to HF patients without ACHD (n = 4336 matched pairs). Patients with ACHD and HF (median age 68 years, 45% women) experienced higher mortality in short-term [30 day adjusted hazard ratio (HR) 4.68, 95% confidence interval (CI) 4.06, 5.43,

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“… 4 , 10 , 33 , 34 Future studies are needed to develop specific pathways to optimize HF care in these patients such that comprehensive management is provided at every HF stage. 35 , 36 …”

Section: Discussionmentioning

confidence: 99%

Outcomes and healthcare resource utilization in adult congenital heart disease patients with heart failure

et al. 2021

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“…14 In a different multisite retrospective study of ACHD patients, 40% had an ICU admission in the last 30 days of their life and 64% died in the hospital. 15 As compared to patients with nonhematologic cancers, patients with ACHD were more likely to have an ICU admission (RR 1.57, 95% CI 1.12e2.18) or to die in the hospital (RR 1.75, 95% CI 1.43e2.13). 15…”

Section: Symptomatologymentioning

confidence: 99%

“…14 Yet, in another retrospective cohort study involving 65 ACHD patients cared for in multiple hospitals across a single geographic region, 42% had a documented advance directive and, as compared to patients with nonhematologic cancers, ACHD patients were more likely to have documentation of ACP in their health records (RR 1.46, 95% CI 1.09e1.96). 15…”

Section: Advance Care Planningmentioning

confidence: 99%

Palliative Care Opportunities Among Adults With Congenital Heart Disease—A Systematic Review

Ludmir

Steiner

Wong

et al. 2019

Journal of Pain and Symptom Management

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Context.Little is known about advance care planning (ACP) and palliative care needs among adults with congenital heart disease (ACHD).Objectives. The objective of this study was to identify and synthesize studies concerning palliative care among ACHD patients. Methods. We searched five electronic databases (PubMed, Embase, SCOPUS, Web of Science, and CINAHL) using the keywords palliative care and congenital heart disease. Inclusion criteria were adults (age > 18 years) with congenital heart disease and publications in English through March 3, 2019.Results. Our search yielded 2872 studies, and after removal of duplicates, we screened 2319 abstracts and identified seven for inclusion. Study findings were grouped into three domains: ACP, symptomatology, and end-of-life care. Among the five cross-sectional studies, only 1%e28% of ACHD patients recalled participating in ACP discussions with their doctors but 69%e78% reported a strong interest and desire to participate in ACP. In one study, 46% (n ¼ 67) of patients had elevated anxiety symptoms (Hospital Anxiety and Depression Scale [HADS-A] $ 8) and 11% (n ¼ 15) had elevated depressive symptoms (HADS-A $ 8). ACHD patients who had a documented goals of care conversation before cardiac decompensation had a lower incidence of resuscitation and aggressive treatments at end of life (12% [n ¼ 3] vs. 100% [n ¼ 12], P < 0.001).Conclusion. While few ACHD patients complete advance directives, our findings support that many ACHD patients recognize the value of initiating end-of-life and goals of care conversations early on in the course of illness. Future studies investigating communication and implementation strategies of ACP as well as the symptom experience of patients with ACHD are needed.

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“…6 24-26 Additionally, patients who are ACHD-HFs require significant hospital resource use near the end of life; there may be an opportunity to improve care through the incorporation of palliative and supportive care. 27 Understanding these data is important for considering allocation of resources within the larger adult HF population, including use of advanced HF therapies such as transplantation and VAD.…”

Section: Discussionmentioning

confidence: 99%

Greater admissions, mortality and cost of heart failure in adults with congenital heart disease

Burstein

Rossano

Griffis

et al. 2020

Heart

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ObjectiveLimited contemporary data exist regarding outcomes and resource use among adults with congenital heart disease and heart failure (ACHD-HF). This study compared outcomes, emergency department (ED) and hospital resource use, and advanced heart failure (HF) therapies in ACHD-HF versus non-ACHD with HF (HF-non-ACHD).MethodsThe Nationwide Emergency Department Sample and Nationwide Inpatient Sample were used to analyse outcomes and resource use among ACHD-HF ED visits and hospitalisations from 2006 to 2016. ACHD-HF was stratified by single-ventricle (SV) and two-ventricle (2V) disease.ResultsA total of 76 557 ACHD-HF visits (3.6% SV physiology) and 31 137 414 HF-non-ACHD visits were analysed. ACHD-HFs were younger (SV 33 years (IQR 25–44), 2V 62 years (IQR 45–76); HF-non-ACHD 74 years (IQR 63–83); p<0.001). ACHD-HFs had higher ED admissions (78% vs 70%, p<0.001), longer hospital length of stay (5 days (IQR 2–8) vs 4 days (IQR 2–7), p<0.001) and greater hospital costs ($49K (IQR 2K–121K) vs $32K (17K–66K), p<0.001). Mortality was significantly higher among ACHD-HFs with SV physiology (6.6%; OR 1.6, 95% CI 1.1 to 2.3) or 2V physiology (6.3%; OR 1.4, 95% CI 1.3 to 1.5) versus HF-non-ACHD (5.5%). ACHF-HF hospitalisations increased more (46% vs 6% HF-non-ACHD) over a 10-year period, but the proportion receiving ventricular assist device (VAD) (ACHD-HF −2% vs HF-non-ACHD 294%) or transplant (ACHD-HF −37% vs HF-non-ACHD 73%) decreased.ConclusionACHD-HFs have significant ED and hospital resource use that has increased over the past 10 years. However, advanced HF therapies (VAD and transplantation) are less commonly used compared with those without adult congenital heart disease.

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Hospital resource utilization and presence of advance directives at the end of life for adults with congenital heart disease

Cited by 24 publications

References 32 publications

Outcomes and healthcare resource utilization in adult congenital heart disease patients with heart failure

Outcomes and healthcare resource utilization in adult congenital heart disease patients with heart failure

Palliative Care Opportunities Among Adults With Congenital Heart Disease—A Systematic Review

Greater admissions, mortality and cost of heart failure in adults with congenital heart disease

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