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Ambulatory Health Care Service Use and Costs Among Commercially Insured US Adults With Congenital Heart Disease

Ambulatory Health Care Service Use and Costs Among Commercially Insured US Adults With Congenital... Research Letter | Cardiology Ambulatory Health Care Service Use and Costs Among Commercially Insured US Adults With Congenital Heart Disease Anushree Agarwal, MD; Eric Vittinghoff, PhD; Janet J. Myers, PhD, MPH; R. Adams Dudley, MD, MBA; Abigail Khan, MD; Anitha John, MD, PhD; Gregory M. Marcus, MD, MAS Introduction Adults with congenital heart disease (CHD) are a rapidly increasing population, have many Supplemental content 2 3 comorbidities, and require frequent monitoring. However, little is known about their ambulatory Author affiliations and article information are health care use and associated costs in the US. listed at the end of this article. Methods International Statistical Classification of Diseases and Related Health Problems, 10th Revision (ICD-10) codes were used to identify patients with CHD, as described previously (eTable in the Supplement). The control group was selected from a random sample of age- and sex-matched individuals without CHD and with at least 1 year of data equivalent to that of the patients with CHD. Comorbidities were identified with Elixhauser comorbidity measures. The American Heart Association/American College of Cardiology anatomic classification was used to categorize adults with CHD as having simple, moderately complex, and complex disease. Wilcoxon and χ tests were used for comparisons of continuous and categoric variables, respectively. To estimate the independent associations of age, sex, US region, beneficiary status, comorbidities, and lesion type with costs, we used zero-inflated negative binomial models. These models accommodate the severe right skewing of costs, as well as the excess of observations with no costs, relative to the standard negative binomial distribution. Adjusted mean costs by lesion group were obtained by regression standardization, based on the fitted negative binomial models. Two-tailed P < .05 was considered statistically significant. Analyses were performed with Stata version 16.0. Data were analyzed on January 28, 2020. Results The mean (SD) age of 33 892 patients included in the study cohort was 35.2 (14.2) years, and 48.8% were women. Of 16 946 patients, 5168 (30.5%) had complex CHD, 5719 (33.8%) had moderately complex CHD, and 6059 (35.7%) had simple CHD. Compared with individuals without CHD, those with CHD had more comorbidities, more health care visits, and higher expenditures (Table). After multivariate adjustments, ambulatory costs remained significantly higher for all types of adults with CHD than for those without it (Figure). Among patients with CHD, after multivariate adjustments, factors independently associated with ambulatory costs were 10-year increase in age (cost ratio, 1.17; 95% CI, 1.13-1.21), female sex (cost ratio, 1.14; 95% CI, 1.05-1.23), primary beneficiary (cost ratio, 0.88; 95% CI, 0.81-0.96), complex CHD (cost ratio, 1.43; 95% CI, 1.29-1.59), cardiac comorbidities (cost ratio, 2.17; 95% CI, 1.90-2.46), and noncardiac comorbidities (cost ratio, 1.92; 95% CI, 1.75-2.10) (P < .005 for all). Open Access. This is an open access article distributed under the terms of the CC-BY License. JAMA Network Open. 2020;3(9):e2018752. doi:10.1001/jamanetworkopen.2020.18752 (Reprinted) September 24, 2020 1/4 JAMA Network Open | Cardiology Ambulatory Health Care Use and Costs for Commercially Insured Adults With CHD Discussion Annual ambulatory health care use and costs were significantly higher for commercially insured adults with CHD than those without it, even after adjusting for their baseline characteristics and comorbidities. Among adults with CHD, complex CHD and presence of comorbidities were independently associated with the highest cost ratio magnitude. This demonstrates the Table. Comparison of Baseline Characteristics, Health Care Use, and Costs for Adults With vs Without Congenital Heart Disease, 2016 Median (IQR) Characteristics ACHD (n = 16 946) Non-ACHD (n = 16 946) P value Age, mean (SD), y 35.2 (14.2) 35.2 (14.2) >.99 Female sex, No. (%) 8275 (48.8) 8275 (48.8) >.99 Primary beneficiaries, No. (%) 7721 (47.5) 7799 (53.2) <.001 US region, No. (%) Northeast 3579 (22.0) 2561 (17.5) North Central 3434 (21.1) 3071 (21.0) South 6894 (42.4) 6656 (45.4) <.001 West 2321 (14.3) 2313 (15.8) Unknown 42 (0.3) 48 (0.3) Comorbidities, No. (%) Any comorbidity 11 547 (77.5) 9230 (62.0) <.001 Cardiovascular 930 (6.2) 68 (0.5) <.001 Noncardiovascular 3964 (26.6) 2556 (17.2) <.001 Services Physician outpatient visits 6.0 (3.0-12.0) 3.0 (1.0-7.0) <.001 Primary care 2.0 (1.0-4.0) 1.0 (0.0-3.0) <.001 Cardiologists 1.0 (0.0-2.0) 0.0 (0.0-0.0) <.001 Other specialists 0.0 (0.0-1.0) 0.0 (0.0-1.0) <.001 Nonphysician outpatient visits 1.0 (0.0-4.0) 0.0 (0.0-2.0) <.001 c c Emergency department visits 0.0 (0.0-2.0) 0.0 (0.0-1.0) <.001 Prescription drug claims 8.0 (1.0-18.0) 3.0 (0.0-11.0) <.001 Expenditures, $ Total cost Ambulatory 3598 (1221-9454) 1068 (230-3640) <.001 Physician 1120 (440-2503) 375 (69-1083) <.001 Nonphysician 839 (90-3413) 125 (0-704) <.001 Emergency department cost 2005 (993-4035) 1583 (808-3209) <.001 Prescription drug cost 213 (13-1237) 64 (0-527) <.001 Out-of-pocket ambulatory cost 802 (246-1862) 261 (33-892) <.001 Abbreviations: ACHD, adults with congenital heart disease; IQR, interquartile range. Cardiovascular comorbidities include congestive heart failure, arrhythmias, pulmonary circulation disorders, hypertension, hypercholesterolemia, coronary artery disease, peripheral vascular disorders, and stroke. Noncardiovascular comorbidities include diabetes, obesity, neurologic disorder, hypothyroidism, liver disease, peptic ulcer, AIDS, any tumor, rheumatoid arthritis/collagen vascular disease, coagulopathy, weight loss, fluid and electrolyte disorders, anemia, kidney disease, substance abuse, psychiatric disorder, and chronic pulmonary disease. Other specialists include neurologist, endocrinologist, gastroenterologist, hematologist, infectious disease specialist, nephrologist, pulmonologist, rheumatologist, gynecologist, psychiatrist, and oncologist. These specialists were chosen because patients with congenital heart disease are known to have a higher incidence of noncardiac comorbidities that require management by these specialists. Nonphysician visits include those for diagnostic testing, physical therapist, etc. We included only emergency department visits that did not result in an inpatient admission. Prescription drug claims represent the number of prescriptions filled by the beneficiary during the given period. Values for emergency department visits represent median (IQR). Total ambulatory cost includes the combination of total outpatient, physician outpatient, nonphysician outpatient, emergency department, and prescription drug costs. Total out-of-pocket costs include copayments, deductibles, and payments for services not covered by insurance. Out-of-pocket costs were counted as a component of the total ambulatory costs. Emergency department cost represents expenditures only for patients who had any emergency department visit. JAMA Network Open. 2020;3(9):e2018752. doi:10.1001/jamanetworkopen.2020.18752 (Reprinted) September 24, 2020 2/4 JAMA Network Open | Cardiology Ambulatory Health Care Use and Costs for Commercially Insured Adults With CHD Figure. Adjusted Annual Total Ambulatory Costs and Out-of-Pocket Costs Physician visits Nonphysician visits ED visits Prescription drugs Change in cost (95% CI), $ P value Complex 6444.9 (5304.1-7585.8) <.001 Simple 3756.9 (2730.9-4783.1) <.001 Moderately complex 3203.1 (2234.5-4171.7) <.001 0 3000 6000 9000 12 000 15 000 Mean annual costs, $ Horizontal bars show each component of ambulatory health care cost (1a) and out-of- hypoplastic left heart syndrome, transposition of great arteries, tetralogy of Fallot, pocket cost (1b) for adults with congenital heart disease (CHD), by lesion category; the truncus arteriosus, and endocardial cushion defect), simple (ventricular septal defect overall length of each bar indicates the total cost. Change in cost indicates the adjusted and patent ductus arteriosus), and moderately complex (Ebstein anomaly, coarctation of difference in overall cost compared with that for frequency-matched non-CHD patients. aorta, anomalies of the pulmonary artery, anomalies of the pulmonary valve, anomalies All costs and cost differences are adjusted for age, sex, US region, beneficiary status, and of the tricuspid valve, unspecified septal defects, anomalies of the great vein, subaortic cardiac and noncardiac comorbidities. ED indicates emergency department. Lesions stenosis, and aortic anomalies). included within each CHD type are complex (Eisenmenger syndrome, common ventricle, extraordinary health care needs of these patients with complex disease, who usually have multisystem disease, and underscores the importance of developing structured work flows to appropriately allocate resources. Our novel CHD severity–specific health care cost estimates may help patients in their personal financial planning (selecting a health insurance plan that will minimize their financial risk, such as opting for employee-provided health savings plans) and policy makers in designing affordable and appropriate health plans. Our study limitations include reliance on ICD-10 codes and limited generalizability to patients who are not commercially insured. In contrast to previous studies of adults with CHD that primarily 5,6 reported charges, our estimates are directly reflective of actual costs and therefore pertinent to understanding health resources required for these patients. In conclusion, we provide data that could be useful to educate clinicians, health care organizations, and patients to guide resource allocation, enhance more efficient work flows, and inform realistic financial expectations. ARTICLE INFORMATION Accepted for Publication: July 20, 2020. Published: September 24, 2020. doi:10.1001/jamanetworkopen.2020.18752 Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2020 Agarwal A et al. JAMA Network Open. Corresponding Author: Anushree Agarwal, MD, Adult Congenital Heart Disease Section, Division of Cardiology, University of California, San Francisco, 500 Parnassus Ave, M-1177B, PO Box 0124, San Francisco, CA 94143-0124 (anu.agarwal2@ucsf.edu). Author Affiliations: Division of Cardiology, Department of Medicine, University of California, San Francisco (Agarwal, Marcus); Department of Epidemiology and Biostatistics, University of California, San Francisco (Vittinghoff); Division of Prevention Science, Department of Medicine, University of California, San Francisco (Myers); Department of Medicine, Philip R. Lee Institute for Health Policy Studies, School of Medicine, and Center for Healthcare Value, University of California, San Francisco (Dudley); Adult Congenital Heart Disease Program, Knight Cardiovascular Institute, Oregon Health & Science University, Portland (Khan); Division of Cardiology, Children's National Health System, Washington, DC (John). Author Contributions: Drs Agarwal and Vittinghoff had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Concept and design: Agarwal, John, Marcus. JAMA Network Open. 2020;3(9):e2018752. doi:10.1001/jamanetworkopen.2020.18752 (Reprinted) September 24, 2020 3/4 JAMA Network Open | Cardiology Ambulatory Health Care Use and Costs for Commercially Insured Adults With CHD Acquisition, analysis, or interpretation of data: Agarwal, Vittinghoff, Myers, Dudley, Khan, Marcus. Drafting of the manuscript: Agarwal, Marcus. Critical revision of the manuscript for important intellectual content: Agarwal, Vittinghoff, Myers, Dudley, Khan, John. Statistical analysis: Agarwal, Vittinghoff. Obtained funding: Agarwal, Marcus. Administrative, technical, or material support: Agarwal, Myers, Marcus. Supervision: Agarwal, Myers, Dudley, Marcus. Conflict of Interest Disclosures: Dr Agarwal reports receiving grants from an American Heart Association/CHF AWRP Mentored Clinical & Population Research Award during the conduct of the study. Dr Vittinghoff reports receiving other from the University of California, San Francisco during the conduct of the study. Dr Marcus reports receiving grants from Jawbone Health outside the submitted work. No other disclosures were reported. Funding/Support: This work was supported in part from an AHA/CHF AWRP Mentored Clinical & Population Research Award (17MCPRP33240000) (Drs Agarwal and Dudley). Role of the Funder/Sponsor: The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication. Additional Contributions: Robert Thombley, BS, provided access to the study cohort from the IBM MarketScan database. He was compensated for his work. REFERENCES 1. Gilboa SM, Devine OJ, Kucik JE, et al. Congenital heart defects in the United States: estimating the magnitude of the affected population in 2010. Circulation. 2016;134(2):101-109. doi:10.1161/CIRCULATIONAHA.115.019307 2. Agarwal A, Thombley R, Broberg CS, et al. Age- and lesion-related comorbidity burden among US adults with congenital heart disease: a population-based study. J Am Heart Assoc. 2019;8(20):e013450. doi:10.1161/JAHA.119. 3. Stout KK, Daniels CJ, Aboulhosn JA, et al. 2018 AHA/ACC guideline for the management of adults with congenital heart disease: executive summary: a report of the American College of Cardiology/American Heart Association Task Force on Clinical Practice Guidelines. Circulation. 2019;139(14):e637-e697. doi:10.1161/CIR. 4. Elixhauser A, Steiner C, Harris DR, Coffey RM. Comorbidity measures for use with administrative data. Med Care. 1998;36(1):8-27. doi:10.1097/00005650-199801000-00004 5. Briston DA, Bradley EA, Sabanayagam A, Zaidi AN. Healthcare costs for adults with congenital heart disease in the USA 2002-2012. Am J Cardiol. 2016;118(4):P590-P596. doi:10.1016/j.amjcard.2016.05.056 6. Opotowsky AR, Siddiqi OK, Webb GD. Trends in hospitalizations for adults with congenital heart disease in the US. J Am Coll Cardiol. 2009;54(5):460-467. doi:10.1016/j.jacc.2009.04.037 SUPPLEMENT. eTable. International Classification of Disease-10 Codes for Congenital Heart Disease (CHD) Lesions JAMA Network Open. 2020;3(9):e2018752. doi:10.1001/jamanetworkopen.2020.18752 (Reprinted) September 24, 2020 4/4 Supplementary Online Content Agarwal A, Vittinghoff E, Myers JJ, et al. Ambulatory health care service u and costs among commercially insured US adults with congenital heart disease. JAMA Netw Open. doi:10.1001/jamanetworkopen.2020.18752 Table. International Classification of Disease-10 This supplementary material has been provided by the authors to give readers additional information about their work. © 2020 t al. . Identifying congenital heart disease (CHD) cohort: Patients were identified as having CHD if they had a diagnosis code for any CHD lesion per International Classification of Disease, Tenth Revision (ICD-10) codes as listed below. If an ICD-9 or ICD-10 code for CHD was present on any inpatient or outpatient claim at any billing position during the period of enrollment, these patients were then considered to have CHD. For patients with codes for more than one CHD diagnosis, we used the hierarchical algorithm proposed by Broberg et al. to designate one condition per patient as their principal CHD diagnosis. We excluded ICD codes that have lower specificity for CHD, including atrial septal defect, bicuspid aortic valve, aortic stenosis, and unspecified congenital anomalies. We also excluded any patients who had pregnancy or delivery related claims during the study period in order to avoid inclusion of pregnant women with fetuses affected by CHD. Table. International classification of disease -10 Codes for Congenital Heart Disease (CHD) Lesions I27.83 PLUS other congenital Eisenmenger (CHD code AND cyanosis) code (I27.83 +Q20-Q28) Hypoplastic left heart syndrome Q23.4 Common ventricle Q20.4 Transposition Complex Q20.1, Q20.3, Q20.5, Q20.8 Tetralogy of Fallot Q21.3 Truncus Arteriosus Q20.0 Endocardial Cushion Defect Q21.2 Ebstein's Anomaly Q22.5 Aortic Coarctation Q25.1 Anomalies of the Pulmonary Artery (except Q25.6, Q25.79, Q25.5, pulmonary atresia) Q25.71 Q22.1, Q22.2, Q22.3 Anomalies of the Pulmonary Valve Q22.4, Q22.8, Q22.9 Anomalies of the Tricuspid valve Ventricular septal defect Q21.0 Patent ductus arteriosus Q25.0 Anomalies of Veins Q26.2, Q26.3, Q26.9 Q21.9 Unspecified Defect of Septal Closure Q24.4 Subaortic stenosis Q25.41, Q25.42, Q25.43, Aortic anomalies Q25.44, Q25.48, Q25.49 CHD – congenital heart disease Broberg C, McLarry J, Mitchell J, et al. Accuracy of administrative data for detection and categorization of adult congenital heart disease patients from an electronic medical record. Pediatr Cardiol. 2015;36(4):719-725. © 2020 t al. . http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JAMA Network Open American Medical Association

Ambulatory Health Care Service Use and Costs Among Commercially Insured US Adults With Congenital Heart Disease

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Abstract

Research Letter | Cardiology Ambulatory Health Care Service Use and Costs Among Commercially Insured US Adults With Congenital Heart Disease Anushree Agarwal, MD; Eric Vittinghoff, PhD; Janet J. Myers, PhD, MPH; R. Adams Dudley, MD, MBA; Abigail Khan, MD; Anitha John, MD, PhD; Gregory M. Marcus, MD, MAS Introduction Adults with congenital heart disease (CHD) are a rapidly increasing population, have many Supplemental content 2 3 comorbidities, and require frequent monitoring. However, little is known about their ambulatory Author affiliations and article information are health care use and associated costs in the US. listed at the end of this article. Methods International Statistical Classification of Diseases and Related Health Problems, 10th Revision (ICD-10) codes were used to identify patients with CHD, as described previously (eTable in the Supplement). The control group was selected from a random sample of age- and sex-matched individuals without CHD and with at least 1 year of data equivalent to that of the patients with CHD. Comorbidities were identified with Elixhauser comorbidity measures. The American Heart Association/American College of Cardiology anatomic classification was used to categorize adults with CHD as having simple, moderately complex, and complex disease. Wilcoxon and χ tests were used for comparisons of continuous and categoric variables, respectively. To estimate the independent associations of age, sex, US region, beneficiary status, comorbidities, and lesion type with costs, we used zero-inflated negative binomial models. These models accommodate the severe right skewing of costs, as well as the excess of observations with no costs, relative to the standard negative binomial distribution. Adjusted mean costs by lesion group were obtained by regression standardization, based on the fitted negative binomial models. Two-tailed P < .05 was considered statistically significant. Analyses were performed with Stata version 16.0. Data were analyzed on January 28, 2020. Results The mean (SD) age of 33 892 patients included in the study cohort was 35.2 (14.2) years, and 48.8% were women. Of 16 946 patients, 5168 (30.5%) had complex CHD, 5719 (33.8%) had moderately complex CHD, and 6059 (35.7%) had simple CHD. Compared with individuals without CHD, those with CHD had more comorbidities, more health care visits, and higher expenditures (Table). After multivariate adjustments, ambulatory costs remained significantly higher for all types of adults with CHD than for those without it (Figure). Among patients with CHD, after multivariate adjustments, factors independently associated with ambulatory costs were 10-year increase in age (cost ratio, 1.17; 95% CI, 1.13-1.21), female sex (cost ratio, 1.14; 95% CI, 1.05-1.23), primary beneficiary (cost ratio, 0.88; 95% CI, 0.81-0.96), complex CHD (cost ratio, 1.43; 95% CI, 1.29-1.59), cardiac comorbidities (cost ratio, 2.17; 95% CI, 1.90-2.46), and noncardiac comorbidities (cost ratio, 1.92; 95% CI, 1.75-2.10) (P < .005 for all). Open Access. This is an open access article distributed under the terms of the CC-BY License. JAMA Network Open. 2020;3(9):e2018752. doi:10.1001/jamanetworkopen.2020.18752 (Reprinted) September 24, 2020 1/4 JAMA Network Open | Cardiology Ambulatory Health Care Use and Costs for Commercially Insured Adults With CHD Discussion Annual ambulatory health care use and costs were significantly higher for commercially insured adults with CHD than those without it, even after adjusting for their baseline characteristics and comorbidities. Among adults with CHD, complex CHD and presence of comorbidities were independently associated with the highest cost ratio magnitude. This demonstrates the Table. Comparison of Baseline Characteristics, Health Care Use, and Costs for Adults With vs Without Congenital Heart Disease, 2016 Median (IQR) Characteristics ACHD (n = 16 946) Non-ACHD (n = 16 946) P value Age, mean (SD), y 35.2 (14.2) 35.2 (14.2) >.99 Female sex, No. (%) 8275 (48.8) 8275 (48.8) >.99 Primary beneficiaries, No. (%) 7721 (47.5) 7799 (53.2) <.001 US region, No. (%) Northeast 3579 (22.0) 2561 (17.5) North Central 3434 (21.1) 3071 (21.0) South 6894 (42.4) 6656 (45.4) <.001 West 2321 (14.3) 2313 (15.8) Unknown 42 (0.3) 48 (0.3) Comorbidities, No. (%) Any comorbidity 11 547 (77.5) 9230 (62.0) <.001 Cardiovascular 930 (6.2) 68 (0.5) <.001 Noncardiovascular 3964 (26.6) 2556 (17.2) <.001 Services Physician outpatient visits 6.0 (3.0-12.0) 3.0 (1.0-7.0) <.001 Primary care 2.0 (1.0-4.0) 1.0 (0.0-3.0) <.001 Cardiologists 1.0 (0.0-2.0) 0.0 (0.0-0.0) <.001 Other specialists 0.0 (0.0-1.0) 0.0 (0.0-1.0) <.001 Nonphysician outpatient visits 1.0 (0.0-4.0) 0.0 (0.0-2.0) <.001 c c Emergency department visits 0.0 (0.0-2.0) 0.0 (0.0-1.0) <.001 Prescription drug claims 8.0 (1.0-18.0) 3.0 (0.0-11.0) <.001 Expenditures, $ Total cost Ambulatory 3598 (1221-9454) 1068 (230-3640) <.001 Physician 1120 (440-2503) 375 (69-1083) <.001 Nonphysician 839 (90-3413) 125 (0-704) <.001 Emergency department cost 2005 (993-4035) 1583 (808-3209) <.001 Prescription drug cost 213 (13-1237) 64 (0-527) <.001 Out-of-pocket ambulatory cost 802 (246-1862) 261 (33-892) <.001 Abbreviations: ACHD, adults with congenital heart disease; IQR, interquartile range. Cardiovascular comorbidities include congestive heart failure, arrhythmias, pulmonary circulation disorders, hypertension, hypercholesterolemia, coronary artery disease, peripheral vascular disorders, and stroke. Noncardiovascular comorbidities include diabetes, obesity, neurologic disorder, hypothyroidism, liver disease, peptic ulcer, AIDS, any tumor, rheumatoid arthritis/collagen vascular disease, coagulopathy, weight loss, fluid and electrolyte disorders, anemia, kidney disease, substance abuse, psychiatric disorder, and chronic pulmonary disease. Other specialists include neurologist, endocrinologist, gastroenterologist, hematologist, infectious disease specialist, nephrologist, pulmonologist, rheumatologist, gynecologist, psychiatrist, and oncologist. These specialists were chosen because patients with congenital heart disease are known to have a higher incidence of noncardiac comorbidities that require management by these specialists. Nonphysician visits include those for diagnostic testing, physical therapist, etc. We included only emergency department visits that did not result in an inpatient admission. Prescription drug claims represent the number of prescriptions filled by the beneficiary during the given period. Values for emergency department visits represent median (IQR). Total ambulatory cost includes the combination of total outpatient, physician outpatient, nonphysician outpatient, emergency department, and prescription drug costs. Total out-of-pocket costs include copayments, deductibles, and payments for services not covered by insurance. Out-of-pocket costs were counted as a component of the total ambulatory costs. Emergency department cost represents expenditures only for patients who had any emergency department visit. JAMA Network Open. 2020;3(9):e2018752. doi:10.1001/jamanetworkopen.2020.18752 (Reprinted) September 24, 2020 2/4 JAMA Network Open | Cardiology Ambulatory Health Care Use and Costs for Commercially Insured Adults With CHD Figure. Adjusted Annual Total Ambulatory Costs and Out-of-Pocket Costs Physician visits Nonphysician visits ED visits Prescription drugs Change in cost (95% CI), $ P value Complex 6444.9 (5304.1-7585.8) <.001 Simple 3756.9 (2730.9-4783.1) <.001 Moderately complex 3203.1 (2234.5-4171.7) <.001 0 3000 6000 9000 12 000 15 000 Mean annual costs, $ Horizontal bars show each component of ambulatory health care cost (1a) and out-of- hypoplastic left heart syndrome, transposition of great arteries, tetralogy of Fallot, pocket cost (1b) for adults with congenital heart disease (CHD), by lesion category; the truncus arteriosus, and endocardial cushion defect), simple (ventricular septal defect overall length of each bar indicates the total cost. Change in cost indicates the adjusted and patent ductus arteriosus), and moderately complex (Ebstein anomaly, coarctation of difference in overall cost compared with that for frequency-matched non-CHD patients. aorta, anomalies of the pulmonary artery, anomalies of the pulmonary valve, anomalies All costs and cost differences are adjusted for age, sex, US region, beneficiary status, and of the tricuspid valve, unspecified septal defects, anomalies of the great vein, subaortic cardiac and noncardiac comorbidities. ED indicates emergency department. Lesions stenosis, and aortic anomalies). included within each CHD type are complex (Eisenmenger syndrome, common ventricle, extraordinary health care needs of these patients with complex disease, who usually have multisystem disease, and underscores the importance of developing structured work flows to appropriately allocate resources. Our novel CHD severity–specific health care cost estimates may help patients in their personal financial planning (selecting a health insurance plan that will minimize their financial risk, such as opting for employee-provided health savings plans) and policy makers in designing affordable and appropriate health plans. Our study limitations include reliance on ICD-10 codes and limited generalizability to patients who are not commercially insured. In contrast to previous studies of adults with CHD that primarily 5,6 reported charges, our estimates are directly reflective of actual costs and therefore pertinent to understanding health resources required for these patients. In conclusion, we provide data that could be useful to educate clinicians, health care organizations, and patients to guide resource allocation, enhance more efficient work flows, and inform realistic financial expectations. ARTICLE INFORMATION Accepted for Publication: July 20, 2020. Published: September 24, 2020. doi:10.1001/jamanetworkopen.2020.18752 Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2020 Agarwal A et al. JAMA Network Open. Corresponding Author: Anushree Agarwal, MD, Adult Congenital Heart Disease Section, Division of Cardiology, University of California, San Francisco, 500 Parnassus Ave, M-1177B, PO Box 0124, San Francisco, CA 94143-0124 (anu.agarwal2@ucsf.edu). Author Affiliations: Division of Cardiology, Department of Medicine, University of California, San Francisco (Agarwal, Marcus); Department of Epidemiology and Biostatistics, University of California, San Francisco (Vittinghoff); Division of Prevention Science, Department of Medicine, University of California, San Francisco (Myers); Department of Medicine, Philip R. Lee Institute for Health Policy Studies, School of Medicine, and Center for Healthcare Value, University of California, San Francisco (Dudley); Adult Congenital Heart Disease Program, Knight Cardiovascular Institute, Oregon Health & Science University, Portland (Khan); Division of Cardiology, Children's National Health System, Washington, DC (John). Author Contributions: Drs Agarwal and Vittinghoff had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Concept and design: Agarwal, John, Marcus. JAMA Network Open. 2020;3(9):e2018752. doi:10.1001/jamanetworkopen.2020.18752 (Reprinted) September 24, 2020 3/4 JAMA Network Open | Cardiology Ambulatory Health Care Use and Costs for Commercially Insured Adults With CHD Acquisition, analysis, or interpretation of data: Agarwal, Vittinghoff, Myers, Dudley, Khan, Marcus. Drafting of the manuscript: Agarwal, Marcus. Critical revision of the manuscript for important intellectual content: Agarwal, Vittinghoff, Myers, Dudley, Khan, John. Statistical analysis: Agarwal, Vittinghoff. Obtained funding: Agarwal, Marcus. Administrative, technical, or material support: Agarwal, Myers, Marcus. Supervision: Agarwal, Myers, Dudley, Marcus. Conflict of Interest Disclosures: Dr Agarwal reports receiving grants from an American Heart Association/CHF AWRP Mentored Clinical & Population Research Award during the conduct of the study. Dr Vittinghoff reports receiving other from the University of California, San Francisco during the conduct of the study. Dr Marcus reports receiving grants from Jawbone Health outside the submitted work. No other disclosures were reported. Funding/Support: This work was supported in part from an AHA/CHF AWRP Mentored Clinical & Population Research Award (17MCPRP33240000) (Drs Agarwal and Dudley). Role of the Funder/Sponsor: The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication. Additional Contributions: Robert Thombley, BS, provided access to the study cohort from the IBM MarketScan database. He was compensated for his work. REFERENCES 1. Gilboa SM, Devine OJ, Kucik JE, et al. Congenital heart defects in the United States: estimating the magnitude of the affected population in 2010. Circulation. 2016;134(2):101-109. doi:10.1161/CIRCULATIONAHA.115.019307 2. Agarwal A, Thombley R, Broberg CS, et al. Age- and lesion-related comorbidity burden among US adults with congenital heart disease: a population-based study. J Am Heart Assoc. 2019;8(20):e013450. doi:10.1161/JAHA.119. 3. Stout KK, Daniels CJ, Aboulhosn JA, et al. 2018 AHA/ACC guideline for the management of adults with congenital heart disease: executive summary: a report of the American College of Cardiology/American Heart Association Task Force on Clinical Practice Guidelines. Circulation. 2019;139(14):e637-e697. doi:10.1161/CIR. 4. Elixhauser A, Steiner C, Harris DR, Coffey RM. Comorbidity measures for use with administrative data. Med Care. 1998;36(1):8-27. doi:10.1097/00005650-199801000-00004 5. Briston DA, Bradley EA, Sabanayagam A, Zaidi AN. Healthcare costs for adults with congenital heart disease in the USA 2002-2012. Am J Cardiol. 2016;118(4):P590-P596. doi:10.1016/j.amjcard.2016.05.056 6. Opotowsky AR, Siddiqi OK, Webb GD. Trends in hospitalizations for adults with congenital heart disease in the US. J Am Coll Cardiol. 2009;54(5):460-467. doi:10.1016/j.jacc.2009.04.037 SUPPLEMENT. eTable. International Classification of Disease-10 Codes for Congenital Heart Disease (CHD) Lesions JAMA Network Open. 2020;3(9):e2018752. doi:10.1001/jamanetworkopen.2020.18752 (Reprinted) September 24, 2020 4/4 Supplementary Online Content Agarwal A, Vittinghoff E, Myers JJ, et al. Ambulatory health care service u and costs among commercially insured US adults with congenital heart disease. JAMA Netw Open. doi:10.1001/jamanetworkopen.2020.18752 Table. International Classification of Disease-10 This supplementary material has been provided by the authors to give readers additional information about their work. © 2020 t al. . Identifying congenital heart disease (CHD) cohort: Patients were identified as having CHD if they had a diagnosis code for any CHD lesion per International Classification of Disease, Tenth Revision (ICD-10) codes as listed below. If an ICD-9 or ICD-10 code for CHD was present on any inpatient or outpatient claim at any billing position during the period of enrollment, these patients were then considered to have CHD. For patients with codes for more than one CHD diagnosis, we used the hierarchical algorithm proposed by Broberg et al. to designate one condition per patient as their principal CHD diagnosis. We excluded ICD codes that have lower specificity for CHD, including atrial septal defect, bicuspid aortic valve, aortic stenosis, and unspecified congenital anomalies. We also excluded any patients who had pregnancy or delivery related claims during the study period in order to avoid inclusion of pregnant women with fetuses affected by CHD. Table. International classification of disease -10 Codes for Congenital Heart Disease (CHD) Lesions I27.83 PLUS other congenital Eisenmenger (CHD code AND cyanosis) code (I27.83 +Q20-Q28) Hypoplastic left heart syndrome Q23.4 Common ventricle Q20.4 Transposition Complex Q20.1, Q20.3, Q20.5, Q20.8 Tetralogy of Fallot Q21.3 Truncus Arteriosus Q20.0 Endocardial Cushion Defect Q21.2 Ebstein's Anomaly Q22.5 Aortic Coarctation Q25.1 Anomalies of the Pulmonary Artery (except Q25.6, Q25.79, Q25.5, pulmonary atresia) Q25.71 Q22.1, Q22.2, Q22.3 Anomalies of the Pulmonary Valve Q22.4, Q22.8, Q22.9 Anomalies of the Tricuspid valve Ventricular septal defect Q21.0 Patent ductus arteriosus Q25.0 Anomalies of Veins Q26.2, Q26.3, Q26.9 Q21.9 Unspecified Defect of Septal Closure Q24.4 Subaortic stenosis Q25.41, Q25.42, Q25.43, Aortic anomalies Q25.44, Q25.48, Q25.49 CHD – congenital heart disease Broberg C, McLarry J, Mitchell J, et al. Accuracy of administrative data for detection and categorization of adult congenital heart disease patients from an electronic medical record. Pediatr Cardiol. 2015;36(4):719-725. © 2020 t al. .

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JAMA Network Open – American Medical Association

Published: Sep 24, 2020

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