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Real-world healthcare utilization in adult congenital heart disease: a systematic review of trends and ratios

Published online by Cambridge University Press:  03 May 2019

Ruben Willems Open the ORCID record for Ruben Willems [Opens in a new window] ,
Amber Werbrouck ,
Julie De Backer  and
Lieven Annemans
Ruben Willems*
Affiliation:
Department of Public Health, Ghent University, Ghent, Belgium
Amber Werbrouck
Affiliation:
Department of Public Health, Ghent University, Ghent, Belgium
Julie De Backer
Affiliation:
Department of Congenital Cardiology and Cardiogenetics, Ghent University Hospital, Ghent, Belgium
Lieven Annemans
Affiliation:
Department of Public Health, Ghent University, Ghent, Belgium
*
Author for correspondence: Ruben Willems, MSc, Corneel Heymanslaan 10, 4K3, 9000 Ghent, Belgium. Tel: +3293328332; Email: Ruben.Willems@ugent.be
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Abstract

Background:

As a result of medical advances, the adult congenital heart disease population is rapidly expanding. Nonetheless, most patients remain prone to increased morbidity and mortality. Therefore, long-term medical resource use is required. This systematic review aims to present the trends over the past decades of medical resource utilization in adult congenital heart disease as well as its current status, with a focus on hospitalizations, emergency department visits, outpatient cardiology visits, and visits to other healthcare professionals.

Methods:

MEDLINE (Pubmed), Embase, and Web of Science were searched for retrospective database research publications. The ISPOR checklist for retrospective database research was used for quality appraisal. Trends over time are explored.

Results:

Twenty-one articles met the inclusion criteria. All but one of the studies was conducted in Western Europe and North America. The absolute number of hospitalizations has been increasing over the last several decades. This increase is highest in patients with mild lesions, although these numbers are largely driven by hospitalizations of patients with an atrial septal defect or a patent foramen ovale. Meanwhile, outpatient cardiology visits are increasing at an even higher pace, and occur most often in geriatric patients and patients with severe lesions. Conversely, the number of hospitalizations per 100 patients is decreasing over time. Literature is scarce on other types of healthcare use.

Conclusion:

A strong rise in healthcare utilization is noticed, despite the mitigating effect of improved efficiency levels. As the population continues to grow, innovative medical management strategies will be required to accommodate its increasing healthcare utilization.

Keywords

Adult congenital heart diseasehealthcare utilizationhospitalizationgeneral practitioneremergency department
Type
Review Article
Information
Cardiology in the Young , Volume 29 , Issue 5 , May 2019 , pp. 553 - 563
Copyright
© Cambridge University Press 2019 

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References

van der Linde, D, Konings, EE, Slager, MA, et al. Birth prevalence of congenital heart disease worldwide: a systematic review and meta-analysis. J Am Coll Cardiol 2011; 58: 2241–2247.CrossRefGoogle ScholarPubMed
Khairy, P, Ionescu-Ittu, R, Mackie, AS, et al. Changing mortality in congenital heart disease. J Am Coll Cardiol 2010; 56: 1149–1157.CrossRefGoogle ScholarPubMed
Marelli, AJ, Mackie, AS, Ionescu-Ittu, R, Rahme, E, Pilote, L. Congenital heart disease in the general population: changing prevalence and age distribution. Circulation 2007; 115: 163–172.CrossRefGoogle ScholarPubMed
Marelli, AJ, Ionescu-Ittu, R, Mackie, AS, et al. Lifetime prevalence of congenital heart disease in the general population from 2000 to 2010. Circulation 2014; 130: 749–756.CrossRefGoogle ScholarPubMed
Verheugt, CL, Uiterwaal, CS, van der Velde, ET, et al. Mortality in adult congenital heart disease. Eur Heart J 2010; 31: 1220–1229.CrossRefGoogle ScholarPubMed
Greutmann, M, Tobler, D, Kovacs, AH, et al. Increasing mortality burden among adults with complex congenital heart disease. Congenit Heart Dis 2015; 10: 117–127.CrossRefGoogle ScholarPubMed
Moons, P, Meijboom, FJ, Baumgartner, H, et al. Structure and activities of adult congenital heart disease programmes in Europe. Eur Heart J 2010; 31: 1305–1310.CrossRefGoogle Scholar
Seckeler, MD, Thomas, ID, Andrews, J, Joiner, K, Klewer, SE. A review of the economics of adult congenital heart disease. Expert Rev Pharmacoecon Outcomes Res 2016; 16: 85–96.CrossRefGoogle ScholarPubMed
Warnes, CA, Liberthson, R, Danielson, GK, et al. Task force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol 2001; 37: 1170–1175.CrossRefGoogle ScholarPubMed
Motheral, B, Brooks, J, Clark, MA, et al. A checklist for retrospective database studies–report of the ISPOR Task Force on Retrospective Databases. Value Health 2003; 6: 90–97.CrossRefGoogle ScholarPubMed
Harrison, JL, Silversides, CK, Oechslin, EN, Kovacs, AH. Healthcare needs of adults with congenital heart disease: study of the patient perspective. J Cardiovasc Nurs 2011; 26: 497–503.CrossRefGoogle ScholarPubMed
Cui, Y, Zhao, D, Sun, J, et al. Hospitalization for congenital heart disease in Beijing: patient characteristics and temporal trends. Cardiovasc Innovations Appl 2017; 2: 193–202.CrossRefGoogle Scholar
Mylotte, D, Pilote, L, Ionescu-Ittu, R, et al. Specialized adult congenital heart disease care: the impact of policy on mortality. Circulation 2014; 129: 1804–1812.CrossRefGoogle ScholarPubMed
Engelfriet, P, Boersma, E, Oechslin, E, et al. The spectrum of adult congenital heart disease in Europe: morbidity and mortality in a 5 year follow-up period. The Euro Heart Survey on adult congenital heart disease. Eur Heart J 2005; 26: 2325–2333.CrossRefGoogle Scholar
Engelfriet, P, Mulder, BJM. Gender differences in adult congenital heart disease. Netherlands Heart J 2009; 17: 414–417.CrossRefGoogle ScholarPubMed
Hoffmann, A, Engelfriet, P, Mulder, B. Radiation exposure during follow-up of adults with congenital heart disease. Int J Cardiol 2007; 118: 151–153.CrossRefGoogle ScholarPubMed
Collins, RT 2nd, Doshi, P, Onukwube, J, Fram, RY, Robbins, JM. Risk factors for increased hospital resource utilization and in-hospital mortality in adults with single ventricle congenital heart disease. Am J Cardiol 2016; 118: 453–462.CrossRefGoogle ScholarPubMed
Tabtabai, S, DeFaria Yeh, D, Stefanescu, A, et al. National trends in hospitalizations for patients with single-ventricle anatomy. Am J Cardiol 2015; 116: 773–778.CrossRefGoogle ScholarPubMed
Stefanescu Schmidt, AC, DeFaria Yeh, D, Tabtabai, S, et al. National trends in hospitalizations of adults with tetralogy of Fallot. Am J Cardiol 2016; 118: 906–911.CrossRefGoogle ScholarPubMed
Cedars, A, Benjamin, L, Vyhmeister, R, et al. Contemporary hospitalization rate among adults with complex congenital heart disease. World J Pediatr Congenit Heart Surg 2016; 7: 334–343.CrossRefGoogle ScholarPubMed
Agarwal, S, Sud, K, Menon, V. Nationwide hospitalization trends in adult congenital heart disease across 2003-2012. J Am Heart Assoc 2016; 5: e002330.CrossRefGoogle ScholarPubMed
Billett, J, Majeed, A, Gatzoulis, M, Cowie, M. Trends in hospital admissions, in-hospital case fatality and population mortality from congenital heart disease in England, 1994 to 2004. Heart 2007; 94: 342–348.CrossRefGoogle ScholarPubMed
Islam, S, Yasui, Y, Kaul, P, Marelli, AJ, Mackie, AS. Congenital heart disease hospitalizations in Canada: a 10-year experience. Can J Cardiol 2016; 32: 197–203.CrossRefGoogle ScholarPubMed
Opotowsky, AR, Siddiqi, OK, Webb, GD. Trends in hospitalizations for adults with congenital heart disease in the U.S. J Am Coll Cardiol 2009; 54: 460–467.CrossRefGoogle ScholarPubMed
O’Leary, JM, Siddiqi, OK, de Ferranti, S, Lanzberg, MJ, Opotowsky, AR. The changing demographics of congenital heart disease hospitalizations in the United States, 1998 through 2010. J Am M Assoc 2013; 309: 984–986.CrossRefGoogle ScholarPubMed
Briston, DA, Bradley, EA, Sabanayagam, A, Zaidi, AN. Health care costs for adults with congenital heart disease in the United States 2002 to 2012. Am J Cardiol 2016; 118: 590–596.CrossRefGoogle ScholarPubMed
Verheugt, CL, Uiterwaal, CSPM, Van Der Velde, ET, et al. The emerging burden of hospital admissions of adults with congenital heart disease. Heart 2010; 96: 872–878.CrossRefGoogle ScholarPubMed
Tutarel, O, Kempny, A, Alonso-Gonzalez, R, et al. Congenital heart disease beyond the age of 60: emergence of a new population with high resource utilization, high morbidity, and high mortality. Eur Heart J 2014; 35: 725–732.CrossRefGoogle ScholarPubMed
Moons, P, Siebens, K, De Geest, S, et al. A pilot study of expenditures on, and utilization of resources in, health care in adults with congenital heart disease. Cardiol Young 2001; 11: 301–313.CrossRefGoogle ScholarPubMed
Mackie, AS, Pilote, L, Ionescu-Ittu, R, Rahme, E, Marelli, AJ. Health care resource utilization in adults with congenital heart disease. Am J Cardiol 2007; 99: 839–843.CrossRefGoogle ScholarPubMed
Agarwal, S, Sud, K, Khera, S, et al. Trends in the burden of adult congenital heart disease in US emergency departments. Clin Cardiol 2016; 39: 391–398.CrossRefGoogle ScholarPubMed
Gatzoulis, MA, Hechter, S, Siu, SC, Webb, GD. Outpatient clinics for adults with congenital heart disease: Increasing workload and evolving patterns of referral. Heart 1999; 81: 57–61.CrossRefGoogle ScholarPubMed
Kempny, A, Diller, GP, Dimopoulos, K, et al. Determinants of outpatient clinic attendance amongst adults with congenital heart disease and outcome. Int J Cardiol 2016; 203: 245–250.CrossRefGoogle ScholarPubMed
Padrutt, M, Bracher, I, Bonassin, F, et al. Impact of growing cohorts of adults with congenital heart disease on clinical workload: a 20-year experience at a tertiary care centre. Swiss Medical Weekly 2017; 147: w14443.Google Scholar
Tang, N, Stein, J, Hsia, RY, Maselli, JH, Gonzales, R. Trends and characteristics of US emergency department visits, 1997-2007. Jama 2010; 304: 664–670.CrossRefGoogle ScholarPubMed
Wren, C, O’sullivan, JJ. Survival with congenital heart disease and need for follow up in adult life. Heart 2001; 85: 438–443.CrossRefGoogle ScholarPubMed
Landzberg, MJ, Murphy, DJ Jr., Davidson, WR Jr., et al. Task force 4: organization of delivery systems for adults with congenital heart disease. J Am Coll Cardiol 2001; 37: 1187–1193.CrossRefGoogle ScholarPubMed
Deanfield, J, Thaulow, E, Warnes, C, et al. Management of grown up congenital heart disease. Eur Heart J 2003; 24: 1035–1084.CrossRefGoogle ScholarPubMed
Baumgartner, H, Bonhoeffer, P, De Groot, NM, et al. ESC Guidelines for the management of grown-up congenital heart disease (new version 2010). Eur Heart J 2010; 31: 2915–2957.Google Scholar
Cordina, R, Nasir Ahmad, S, Kotchetkova, I, et al. Management errors in adults with congenital heart disease: prevalence, sources, and consequences. Eur Heart J 2018; 39: 982–989.CrossRefGoogle ScholarPubMed
Sondergaard, L, Kasner, SE, Rhodes, JF, et al. Patent foramen ovale closure or antiplatelet therapy for cryptogenic stroke. New England J Med 2017; 377: 1033–1042.CrossRefGoogle ScholarPubMed
Mas, JL, Derumeaux, G, Guillon, B, et al. Patent foramen ovale closure or anticoagulation vs. antiplatelets after stroke. New England J Med 2017; 377: 1011–1021.CrossRefGoogle ScholarPubMed
Saver, JL, Carroll, JD, Thaler, DE, et al. Long-Term Outcomes of Patent Foramen Ovale Closure or Medical Therapy after Stroke. New England J Med 2017; 377: 1022–1032.CrossRefGoogle ScholarPubMed
Pickett, CA, Villines, TC, Resar, JR, Hulten, EA. Cost effectiveness and clinical efficacy of patent foramen ovale closure as compared to medical therapy in cryptogenic stroke patients: a detailed cost analysis and meta-analysis of randomized controlled trials. Int J Cardiol 2018; 273: 74–79.CrossRefGoogle ScholarPubMed
Hildick-Smith, D, Turner, M, Shaw, L, et al. Evaluating the cost-effectiveness of percutaneous closure of a patent foramen ovale versus medical management in patients with a cryptogenic stroke: from the UK payer perspective. J Med Econ 2018: 1–9.Google Scholar
Zomer, AC, Vaartjes, I, Uiterwaal, CS, et al. Circumstances of death in adult congenital heart disease. Int J Cardiol 2012; 154: 168–172.CrossRefGoogle ScholarPubMed
Tutarel, O. Acquired heart conditions in adults with congenital heart disease: a growing problem. Heart 2014; 100: 1317–1321.CrossRefGoogle ScholarPubMed
Shum, KK, Gupta, T, Canobbio, MM, Durst, J, Shah, SB. Family planning and pregnancy management in adults with congenital heart disease. Prog Cardiovas Dis 2018; 61.CrossRefGoogle ScholarPubMed
Weiss, AJ, Elixhauser, A. Overview of Hospital Stays in the United States, 2012: Statistical Brief #180. Healthcare Cost and Utilization Project (HCUP) Statistical Briefs Agency for Healthcare Research and Quality (US), Rockville (MD), 2014.Google ScholarPubMed
Verheugt, CL, Uiterwaal, CS, van der Velde, ET, et al. Gender and outcome in adult congenital heart disease. Circulation 2008; 118: 26–32.CrossRefGoogle ScholarPubMed
Oliver, JM, Gallego, P, Gonzalez, AE, et al. Impact of age and sex on survival and causes of death in adults with congenital heart disease. Int J Cardiol 2017; 245: 119–124.CrossRefGoogle ScholarPubMed
White, KS, Pardue, C, Ludbrook, P, et al. Cardiac denial and psychological predictors of cardiac care adherence in adults with congenital heart disease. Behav Modification 2016; 40: 29–50.CrossRefGoogle ScholarPubMed
Schoormans, D, Sprangers, MA, Pieper, PG, et al. The perspective of patients with congenital heart disease: does health care meet their needs? Congenit Heart Dis 2011; 6: 219–227.CrossRefGoogle ScholarPubMed
Schoormans, D, Sprangers, MA, van Melle, JP, et al. Clinical and psychological characteristics predict future healthcare use in adults with congenital heart disease. Eur J Cardiovasc Nurs 2016; 15: 72–81.CrossRefGoogle ScholarPubMed
BMJ 2014; 348: g1072.CrossRefGoogle Scholar
Simeone, RM, Oster, ME, Hobbs, CA, et al. Population-based study of hospital costs for hospitalizations of infants, children, and adults with a congenital heart defect, Arkansas 2006 to 2011. Birth Defects Res A Clin Mol Teratol 2015; 103: 814–820.CrossRefGoogle ScholarPubMed
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