Specialized Adult Congenital Heart Care Saves Lives

Webb, Gary D.; Landzberg, Michael J.; Daniels, Curt J.

doi:10.1161/circulationaha.114.009049

Cited by 13 publications

(10 citation statements)

References 10 publications

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“…As of 2015, there are 114 self‐designated ACHD specialty centers in the United States, with 799 median patient visits per year . However, it is estimated that more than 500 000 patients with complex CHD require specialized ACHD care in the United States, exposing a major gap in current healthcare delivery to these patients . Despite establishment and growth of ACHD centers across the nation, a sizeable proportion of all ACHD admissions continue to present to small/medium‐sized hospitals.…”

Section: Discussionmentioning

confidence: 99%

Nationwide Hospitalization Trends in Adult Congenital Heart Disease Across 2003–2012

Agarwal

Sud

Menon

2016

JAHA

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BackgroundWe aimed to assess trends in hospitalization, outcomes, and resource utilization among patients admitted with adult congenital heart disease (ACHD).Methods and ResultsWe used the 2003–2012 US Nationwide Inpatient Sample for this study. All admissions with an ACHD were identified using standard ICD codes. Resource utilization was assessed using length of stay, invasive procedure utilization, and cost of hospitalization. There was a significant increase in the number of both simple (101%) as well as complex congenital heart disease (53%)–related admissions across 2003–2012. In addition, there was a considerable increase in the prevalence of traditional cardiovascular risk factors including older age, along with a higher prevalence of hypertension, diabetes, smoking, obesity, chronic kidney disease, and peripheral arterial disease. Besides miscellaneous causes, congestive heart failure (11.8%), valve disease (15.5%), and cerebrovascular accident (26.1%) were the top causes of admission to the hospital among patients with complex ACHD, simple ACHD without atrial septal defects/patent foramen ovale and simple atrial septal defects/patent foramen ovale patients, respectively. In‐hospital mortality has been relatively constant among patients with complex ACHD as well as simple ACHD without atrial septal defects/patent foramen ovale. However, there has been considerable increase in the average length of stay and cost of hospitalization among the ACHD patients during 2003–2012.ConclusionsThere has been a progressive increase in ACHD admissions across 2003–2012 in the United States, with increasing healthcare resource utilization among these patients. Moreover, there has been a change in the cardiovascular comorbidities of these patients, adding a layer of complexity in management of ACHD patients.

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Section: Discussionmentioning

confidence: 99%

Nationwide Hospitalization Trends in Adult Congenital Heart Disease Across 2003–2012

Agarwal

Sud

Menon

2016

JAHA

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“…As of 2015, there are 114 self‐designated ACHD specialty centers in the United States, with 799 median patient visits per year . However, it is estimated that >500 000 patients with complex ACHD require specialized care in the United States, exposing a major gap in current health care delivery to these patients . For the first time, the current study has characterized the burden of ACHD patients in US EDs.…”

Section: Discussionmentioning

confidence: 99%

“…12 However, it is estimated that >500 000 patients with complex ACHD require specialized care in the United States, exposing a major gap in current health care delivery to these patients. 13,14 For the first time, the current study has characterized the burden of ACHD patients in US EDs. During 2006 2012, there was an increase in the absolute number as well as the relative proportion of ACHD patients presenting to the ED.…”

Section: Discussionmentioning

confidence: 99%

Trends in the Burden of Adult Congenital Heart Disease in US Emergency Departments

Agarwal

Sud

Khera

et al. 2016

Clinical Cardiology

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Background: We assessed trends in incidence, in-hospital mortality, and admission among patients with adult congenital heart disease (ACHD) presenting to the emergency department (ED) from 2006 to 2012. Hypothesis: There is a considerable burden of ACHD in the US EDs. Methods: We used the 2006-2012 US Nationwide Emergency Department Sample. All ED visits with ACHD were identified using standard International Classification of Diseases, Ninth Edition, Clinical Modification codes. Results: The number of patients presenting to the ED with simple (40.6%) as well as complex (37.6%) ACHD across 2006-2012 increased significantly. Also, there was a considerable increase in prevalence of traditional cardiovascular risk factors among ACHD patients, including hypertension, diabetes, smoking, obesity, and chronic kidney disease. Besides miscellaneous noncardiovascular conditions, nonspecific chest pain (15.9%) and respiratory disorders (15.0%) were the most common reasons for ED visits among patients with simple and complex ACHD, respectively. Although there was a trend toward decrease in admissions across 2006-2012 (P trend < 0.001), the proportion of patients with ACHD presenting to ED requiring admission remained substantial (63.4%). Finally, there was significant variation in admission trends across different geographic locations, hospital types, insurance status, and ED volume among ACHD patients presenting to the ED. Conclusions: There has been a progressive increase in number of ED visits among ACHD patients across 2006-2012 in the United States. Moreover, the cardiovascular risk-factor profile of ACHD patients has changed, adding to complexity in management. Current health care delivery to ACHD patients also shows significant geographical, hospital-based, and insurance status-based disparities.

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“…15 We have extended this work by highlighting how specialized care was advanced with the organizational beginning of the 1990s, which also promoted collaboration of central bodies and formalized ACHD practitioner training. There is "a huge gap" because outpatient volume and inpatient admissions "have increased exponentially without of course funding [the] increase in resources" (hcp).…”

Section: Demographic Shiftmentioning

confidence: 99%

“…The need for specialized care of the ACHD population was recognized in the 1980s 3 and has since been found to reduce mortality. 15 We have extended this work by highlighting how specialized care was advanced with the organizational beginning of the 1990s, which also promoted collaboration of central bodies and formalized ACHD practitioner training.…”

Section: Demographic Shiftmentioning

confidence: 99%

Historical investigation of medical treatment for adult congenital heart disease: A Canadian perspective

Lapum

Fredericks

Bailey

et al. 2018

Congenital Heart Disease

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Objective:The number of adults with congenital heart disease (CHD) has increased substantially because of medical advances that are extending life expectancy beyond childhood. A historical investigation is timely not only because of this significant demographic shift, but also because stakeholder engagement is increasingly important in shaping research directions. The study questions were: From the perspective of stakeholders, what is known about the medical treatment for the adult CHD cohort in Canada and how has it changed over time?Design/Methods: We harnessed the use of historical research methods and conducted interviews with 21 key informants in order to articulate a contextualized understanding of the evolution of adult CHD treatment in Canada. The informants recruited were currently or previously located in and/or involved in treatment in seven provinces and two territories across Canada including patients, families, advocates, researchers, and practitioners located in disciplines that included cardiology, cardiovascular surgery, nursing, psychology, dietetics, and kinesiology.Results: Alongside findings that highlighted the significant demographic shift, the findings highlight key themes related to temporal shifts in treatment, emergence of organizational structures and use of evidence, comprehensive approaches to care, and future directions. A critical finding that requires immediate attention is the significantly disproportionate resources to the number of adults living with CHD, and as a result, the real risk of premature death for this population. Conclusions:The insights provided behoove the community of stakeholders to think creatively on how to draw attention to the inadequacy of resources and the unique and diverse needs of this population.

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Specialized Adult Congenital Heart Care Saves Lives

Cited by 13 publications

References 10 publications

Nationwide Hospitalization Trends in Adult Congenital Heart Disease Across 2003–2012

Nationwide Hospitalization Trends in Adult Congenital Heart Disease Across 2003–2012

Trends in the Burden of Adult Congenital Heart Disease in US Emergency Departments

Historical investigation of medical treatment for adult congenital heart disease: A Canadian perspective

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