Different levels of care for follow-up of adults with congenital heart disease: a cost analysis scrutinizing the impact on medical costs, hospitalizations, and emergency department visits

AbstractBackground:Children with congenital heart disease (CHD) require lifelong cardiology follow-up. Many experience gaps in care around the age of transition to adult-oriented care with associated comorbidity. We describe the impact of a clinic-based intervention on follow-up rates in this high-risk population.Methods:Patients ≥11 years seen in a paediatric outpatient CHD Transition Clinic completed self-assessment questionnaires, underwent focused teaching, and were followed on a clinic registry with assessment of care continuation. The cohort “lost to follow-up” rate, defined as absence from care at least 6 months beyond the recommended timeframe, was compared with a control group. Secondary outcomes included questionnaire scores and adult cardiology referral trends.Results:Over 26 months, 53 participants completed an initial Transition Clinic visit; 43% (23/53) underwent a second visit. Median participant age was 18.0 years (interquartile range 16.0, 22.0). The cohort’s “lost to follow-up” rate was 7.3%, which was significantly lower than the control rate (25.9%, p < 0.01). Multivariable regression analyses demonstrated clinic participation as the only factor independently associated with follow-up rates (p = 0.048). Transition readiness was associated with older age (p = 0.01) but not sex, univentricular heart, interventional history, or surgical complexity. One-third of adult participants transferred to adult care.Conclusions:A CHD Transition Clinic intervention can improve follow-up rates in adolescents and young adults. Age is an important factor in transition readiness, and retention of adults in paediatric care appears multi-factorial. We postulate that serial assessments of self-management, focused education, and registry utilisation may improve patient outcomes by reducing lapses in care.

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What do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education

Heart ◽

10.1136/hrt.86.1.74 ◽

2001 ◽

Vol 86 (1) ◽

pp. 74-80

Author(s):

P Moons ◽

E De Volder ◽

W Budts ◽

S De Geest ◽

J Elen ◽

...

Keyword(s):

Congenital Heart Disease ◽

Heart Disease ◽

Congenital Heart ◽

Heart Diseases ◽

Adult Congenital Heart Disease ◽

Tertiary Care ◽

Educational Interventions ◽

Heart Defect ◽

The Impact

OBJECTIVETo assess how much adults with congenital heart disease understand about their heart defect, its treatment, and the preventive measures necessary to avoid complications.DESIGNDescriptive, cross sectional study.SETTINGAdult congenital heart disease programme in one tertiary care centre in Belgium.PATIENTS62 adults with congenital heart disease (47 men; 15 women), median age 23 years.MAIN OUTCOME MEASURESPatients' knowledge was assessed during an outpatient visit using the Leuven knowledge questionnaire for congenital heart diseases, a 33 item instrument developed for this study.RESULTSPatients had adequate knowledge (> 80% correct answers) about their treatment, frequency of follow up, dental practices, occupational choices, appropriateness of oral contraceptives, and the risks of pregnancy. Knowledge about the name and anatomy of the heart defect, the possibility of recurrent episodes of endocarditis during their lifetime, and the appropriateness of different physical activities was moderate (50–80% correct answers). There was poor understanding (< 50% correct answers) about the reasons for follow up, the symptoms of deterioration of the heart disease, the definition, characteristics, and risk factors of endocarditis, the impact of smoking and alcohol on the heart disease, the hereditary nature of the condition, and the suitability of intrauterine devices as contraceptives.CONCLUSIONSAdults with congenital heart disease have important gaps in their knowledge about their condition. The results of this study can be used as a basis for developing or optimising structured educational interventions to enhance patients' health behaviour.

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EMERGENCY DEPARTMENT VISITS AMONG CHILDREN WITH CONGENITAL HEART DISEASE IN THE UNITED STATES FROM 2006 TO 2014

Journal of the American College of Cardiology ◽

10.1016/s0735-1097(18)31146-x ◽

2018 ◽

Vol 71 (11) ◽

pp. A605

Author(s):

Jonathan Edelson ◽

Joseph William Rossano ◽

Heather Griffis ◽

Dingwei Dai ◽

Jennifer Faerber ◽

...

Keyword(s):

United States ◽

Emergency Department ◽

Congenital Heart Disease ◽

Heart Disease ◽

Congenital Heart ◽

The United States ◽

Emergency Department Visits

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Emergency Department Visits by Children With Congenital Heart Disease

Journal of the American College of Cardiology ◽

10.1016/j.jacc.2018.07.055 ◽

2018 ◽

Vol 72 (15) ◽

pp. 1817-1825 ◽

Cited By ~ 1

Author(s):

Jonathan B. Edelson ◽

Joseph W. Rossano ◽

Heather Griffis ◽

Dingwei Dai ◽

Jennifer Faerber ◽

...

Keyword(s):

Emergency Department ◽

Congenital Heart Disease ◽

Heart Disease ◽

Congenital Heart ◽

Emergency Department Visits

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Health Service Utilization Patterns Among Adults With Congenital Heart Disease: A Population‐Based Study

Journal of the American Heart Association ◽

10.1161/jaha.120.018037 ◽

2021 ◽

Vol 10 (2) ◽

Author(s):

Michal Benderly ◽

Jonathan Buber ◽

Ofra Kalter‐Leibovici ◽

Leonard Blieden ◽

Alexander Dadashev ◽

...

Keyword(s):

Primary Care ◽

Emergency Department ◽

Congenital Heart Disease ◽

Heart Disease ◽

Service Utilization ◽

Congenital Heart ◽

Emergency Department Visits ◽

Female Sex ◽

Outpatient Visits ◽

Utilization Patterns

Background Several studies have examined hospitalizations among patients with adult congenital heart disease (ACHD). Few investigated other services or utilization patterns. Our aim was to study service utilization patterns and predictors among patients with ACHD. Methods and Results We identified 11 653 patients with ACHD aged ≥18 years (median, 47 years), through electronic records of 2 large Israeli healthcare providers (2007–2011). The association between patient, disease, and sociogeographic characteristics and healthcare resource utilization were modeled as recurrent events accounting for the competing death risk. Patients with ACHD had high healthcare utilization rates compared with the general population. The highest standardized service utilization ratios (SSRs) were found among patients with complex congenital heart disease including primary care visits (SSR, 1.53; 95% CI, 1.47–1.58), cardiology outpatient visits (SSR, 5.17; 95% CI, 4.69–5.64), hospitalizations (SSR, 6.68; 95% CI, 5.82–7.54), and days in hospital (SSR, 15.37; 95% CI, 14.61–16.12). Adjusted resource utilization hazard increased with increasing lesion complexity. Hazard ratios (HRs) for complex versus simple disease were: primary care (HR, 1.14; 95% CI, 1.06–1.23); cardiology outpatient visits (HR, 1.40; 95% CI, 1.24–1.59); emergency department visits (HR, 1.19; 95% CI, 1.02–1.39); and hospitalizations (HR, 1.75; 95% CI, 1.49–2.05). Effects attenuated with age for cardiology outpatient visits and hospitalizations and increased for emergency department visits. Female sex, geographic periphery, and ethnic minority were associated with more primary care visits, and female sex (HR versus men, 0.89 [95% CI, 0.84–0.94]) and periphery (HR, 0.72 [95% CI, 0.58–0.90] for very peripheral versus very central) were associated with fewer cardiology visits. Arab minority patients also had high hospitalization rates compared with the majority group of Jewish or other patients. Conclusions Healthcare utilization rates were high among patients with ACHD. Female sex, geographic periphery, and ethnicity were associated with less optimal service utilization patterns. Further research should examine strategies to optimize service utilization in these groups.

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PREDICTORS OF EMERGENCY DEPARTMENT VISITS AMONG ADULT CONGENITAL HEART DISEASE PATIENTS: A POPULATION-BASED ANALYSIS

Journal of the American College of Cardiology ◽

10.1016/s0735-1097(14)60604-5 ◽

2014 ◽

Vol 63 (12) ◽

pp. A604

Author(s):

Vanessa Nanci ◽

Judith Therrien ◽

Mohammed Kaouache ◽

Darren Mylotte ◽

Ariane Marelli

Keyword(s):

Emergency Department ◽

Congenital Heart Disease ◽

Heart Disease ◽

Congenital Heart ◽

Adult Congenital Heart Disease ◽

Population Based ◽

Emergency Department Visits ◽

Adult Congenital

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Long-Term Follow-up after Radiofrequency Catheter Ablation of Atrial Tachycardias in Patients with Congenital Heart Disease

10.1055/s-0040-1705579 ◽

2020 ◽

Author(s):

S. Klehs ◽

H. Schneider ◽

D. J. Backhoff ◽

M. Müller ◽

T. Paul ◽

...

Keyword(s):

Congenital Heart Disease ◽

Heart Disease ◽

Catheter Ablation ◽

Radiofrequency Catheter Ablation ◽

Congenital Heart ◽

Long Term Follow Up

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The impact of medical interventions on admission characteristics in children with congenital heart disease and cardiomyopathy

Cardiology in the Young ◽

10.1017/s1047951120004175 ◽

2020 ◽

pp. 1-8

Author(s):

Rohit S. Loomba ◽

Jacqueline Rausa ◽

Vincent Dorsey ◽

Ronald A. Bronicki ◽

Enrique G. Villarreal ◽

...

Keyword(s):

Congenital Heart Disease ◽

Heart Disease ◽

Length Of Stay ◽

Congenital Heart ◽

Unit Length ◽

Channel Blockers ◽

Regression Analyses ◽

Converting Enzyme Inhibitors ◽

Medical Interventions ◽

The Impact

Abstract Introduction: Children with congenital heart disease and cardiomyopathy are a unique patient population. Different therapies continue to be introduced with large practice variability and questionable outcomes. The purpose of this study is to determine the impact of various medications on intensive care unit length of stay, total length of stay, billed charges, and mortality for admissions with congenital heart disease and cardiomyopathy. Materials and methods: We identified admissions of paediatric patients with cardiomyopathy using the Pediatric Health Information System database. The admissions were then separated into two groups: those with and without inpatient mortality. Univariate analyses were conducted between the groups and the significant variables were entered as independent variables into the regression analyses. Results: A total of 10,376 admissions were included these analyses. Of these, 904 (8.7%) experienced mortality. Comparing patients who experienced mortality with those who did not, there was increased rate of acute kidney injury with an odds ratio (OR) of 5.0 [95% confidence interval (CI) 4.3 to 5.8, p < 0.01], cardiac arrest with an OR 7.5 (95% CI 6.3 to 9.0, p < 0.01), and heart transplant with an OR 0.3 (95% CI 0.2 to 0.4, p < 0.01). The medical interventions with benefit for all endpoints after multivariate regression analyses in this cohort are methylprednisolone, captopril, enalapril, furosemide, and amlodipine. Conclusions: Diuretics, steroids, angiotensin-converting enzyme inhibitors, calcium channel blockers, and beta blockers all appear to offer beneficial effects in paediatric cardiomyopathy admission outcomes. Specific agents within each group have varying effects.

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