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International Journal of Cardiology Congenital Heart Disease logoLink to International Journal of Cardiology Congenital Heart Disease
. 2022 Jan 26;7:100334. doi: 10.1016/j.ijcchd.2022.100334

Trends in outpatient visits and deaths due to congenital heart defects in Peru

Astrid Tauma-Arrué a,b, Samantha Chávez-Saldivar a,b, Juan Carlos Mego a,b, Odalis Luis-Ybáñez a,b, Joel Coronado-Quispe a,b, Stella Lucena c, Carlos Alvarez c, Eneida Melgar c, Alberto Morales d, Rafael Marquez e, Holly Wilhalme f, Katia Bravo-Jaimes g,
PMCID: PMC11658395  PMID: 39712258

Abstract

Introduction

Congenital heart defects (CHD) are the most frequent congenital birth defects, affecting approximately 1% of newborns and constituting the main cause of death among all congenital malformations. The prevalence of CHD in Andean America is heterogeneous and in Peru the burden of CHD is unknown.

Objective

To describe the trends of CHD outpatient visits and mortality and their variation according to sex, age and altitude levels.

Methods

We performed a secondary data analysis of CHD outpatient visits and mortality using publicly available information from the Peruvian Ministry of Health national registries from 2000 to 2020.

Results

There was a statistically significant increase in CHD outpatient visits of 20.4 over time. Pediatric patients, those who lived at low altitude (≤2500 ​m above sea level) and those who lived in the capital of Peru had a higher average number of outpatient visits per 100 ​000 population. CHD-related mortality increased by 0.31 per million population per year. Although this trend was not statistically significant overall, pediatric patients experienced higher mortality than adults.

Conclusion

In Peru, the outpatient CHD volume has increased significantly over the last two decades, however CHD-related mortality has remained constant. Children in the first decade of life are the predominant group in both, outpatient CHD volume and mortality.

Keywords: Congenital heart disease, Burden, Mortality, Andes, South America, Peru

Highlights

  • CHD outpatient visits have dramatically increased in the last two decades in Peru.

  • Despite the increase in CHD outpatient visits, overall CHD-related mortality has remained constant.

  • Pediatric patients experience a higher increase in outpatient volume and mortality.

1. Introduction

Congenital heart defects (CHD) are the most frequent congenital birth defects, affecting approximately 1% of newborns and constituting the main cause of death among all congenital malformations [1,2]. There is variation in the prevalence of CHD among countries with low and high socio-demographic index, ranging from 1255.5 to 2501.1 per 100 ​000 live births. In Andean America the reported prevalence is 1326.8 per 100 ​000 live births [3], which can be explained by the lack of national fetal or neonatal screening programs, variable data capture, lower incidence in high-altitude regions and disparities in access to care [4].

Early detection, technological development in screening, diagnosis and management have improved survival rates among patients with complex CHD to higher than 90% in high-income countries [5]. However, this has not been the case in medium-low or low income regions, such as Andean America, where mortality rates for CHD have increased by 7% [2]. In Peru, a country with universal obstetric and pediatric health insurance coverage; centralized congenital heart surgery centers; limited access to fetal and pediatric echocardiography; absent national critical CHD screening program or CHD health policies; the burden of CHD is unknown. Therefore, we designed this study to describe the trends of CHD outpatient visits and mortality and their variation according to sex, age and altitude levels.

2. Methods

We performed a secondary data analysis using publicly available information recorded by the Peruvian Ministry of Health (MINSA) national registries (https://www.gob.pe/minsa). These registries included all patients from the 25 regions of Peru who had a final diagnosis of CHD based on International Classification of Diseases (ICD) 10 codes Q20-Q29. Outpatient visits recorded by MINSA from 2002 to 2020 were included. CHD-related deaths (deaths where CHD diagnoses based on ICD 10 codes Q20-Q29 were the underlying cause of death) from 2004 to 2017 were obtained from MINSA. The number of outpatient visits and deaths were categorized according to sex (female vs. male), age (adult vs. pediatric) and altitude level [high altitude >2500 ​m above sea level (m.a.s.l) vs. low altitude ≤2500 ​m.a.s.l]. CHD outpatient visits to population ratios were obtained by dividing the number of CHD outpatient visits by the expected population from the whole country for that year according to the National Institute of Statistics and Informatics (INEI, in Spanish) census projections. Trends in CHD outpatient visits to population ratios were analyzed using linear regression with factors for time, the variable of interest (sex, age, or altitude), and an interaction effect between time and the variable of interest.

Crude mortality rates due to CHD were obtained by dividing the number of CHD-related deaths by the expected population from the whole country for that year according to INEI census projections. Age-standardized rates were also calculated using the direct method and the global population 2000–2020 proposed by the World Health Organization. Age groups used to calculate these rates were based on the available age groups in the data (0–11 years, 12–17 years, 18–29 years, 30–59 years and >60 years). Linear regression was used to assess time trends using CHD mortality age-standardized death rates. Heat maps were made for both the CHD outpatient visits to population ratio as well as the CHD mortality rate based on tertiles. All analyses were performed with STATA v14.

3. Results

CHD outpatient visits increased from 4242 (15.8 per 100 ​000 population) in 2002 to 7581 (24 per 100 ​000 population) in 2020, with a clear upward trend since the year 2015 but with a marked drop in 2020 (Fig. 1). Overall, there was a statistically significant increase in CHD outpatient visits of 20.4 (SE ​= ​9.0, p ​= ​0.03) over time. Those in low altitude settings had a higher average increase in CHD outpatient visits of 2.95 per 100 ​000 per year versus those in high altitude settings (p ​= ​0.05). A greater number of CHD outpatient visits was also seen among children from 0 to 18 years (p ​= ​0.007) at an average increase of 7 visits per year versus adults. There was no significant difference in the trends between males and females (p ​= ​0.87). A greater number of CHD outpatient visits was also seen in Lima (p ​= ​0.02) at an average increase of 6.8 visits per year versus those outside the capital.

Fig. 1.

Fig. 1

CHD outpatient visits per 100 ​000 population by sex, age, altitude and city of origin.

Using age-standardized rates per million population, linear regression estimated that CHD-related deaths increased 0.31 per million people per year, however this increase was not statistically significant (p ​= ​0.11, Table 1, Fig. 2). There was a statistically significant difference in the crude rates of change between pediatric and adult deaths over time with pediatric deaths increasing by 1.34 per million per year (p ​= ​0.001) versus adult deaths decreasing by −0.011 per million (p ​= ​0.97) for a difference between slopes of 1.35 (p ​= ​0.01). Those in low altitude settings had an estimated average increase of 0.43 deaths per million year (p ​= ​0.04) compared to an estimated average increase in high altitude settings of 0.20 per million per year (p ​= ​0.33), however the difference between the two was not statically significant. Differences in slopes for CHD-related deaths were also not statistically different by city of origin (0.039 vs 0.036 for Lima vs other cities, p ​= ​0.92) or by sex (0.29 vs 0.33 for females vs males, respectively. p ​= ​0.86) (Fig. 3). Heat maps demonstrated that the areas with highest CHD outpatient visits and CHD-related mortality were Lambayeque, Arequipa and Tacna (Fig. 4).

Table 1.

Crude and age-standardized CHD mortality rates in Peru.

Year CHD crude mortality rate (per 100,000) Age-standardized CHD mortality rate (per 100,000)
2004 16.33197 16.351013
2005 11.903756 11.866005
2006 16.216342 16.091537
2007 14.081423 13.903566
2008 10.95392 10.761261
2009 11.690232 11.430724
2010 12.198133 11.879736
2011 11.866161 11.510958
2012 14.151675 13.671413
2013 17.108963 16.472441
2014 20.090211 19.309295
2015 17.020141 16.371528
2016 14.462822 13.9733
2017 20.30736 19.763704

Fig. 2.

Fig. 2

Trends of age-standardized CHD-related mortality per million population.

Fig. 3.

Fig. 3

CHD-related mortality per million population by sex, age, altitude and city of origin.

Fig. 4.

Fig. 4

Heat maps for CHD outpatient visits and CHD-related mortality in Peru.

4. Discussion

Our study demonstrates that CHD outpatient visits have dramatically increased in the last two decades in Peru, with a marked upward trend since 2015 and a transient drop in the year 2020 likely due to the COVID-19 pandemic [6]. These trends have favored the pediatric population and cities located at low altitude, especially the capital, Lima. Despite this marked increase in CHD outpatient volume, overall CHD-related mortality has remained constant but a significantly higher crude CHD-related mortality rate affecting the pediatric subgroup was noted.

Increased outpatient CHD volume can be explained by several social and healthcare landmarks. First, health care coverage under MINSA healthcare system has expanded since it was first launched in 1998, when it covered pregnant women and children under the age of 5 in five regions of the country [7]. With the “Integral Health Insurance” (Seguro integral de Salud, SIS) creation in 2002, access to other populations across all Peruvian regions began and became widespread in the late 2010s. Second, two specialized centers for the care of pediatric patients with CHD were created in 2013; the National Pediatric Cardiovascular Center of the National Heart Institute “Carlos Alberto Peschiera Carrillo” (part of EsSalud healthcare system, which covers 30% of Peruvians) and the Cardiology and Cardiovascular Surgery Integral Specialized Care Sub-Unit of the Children's Health Institute-San Borja (part of MINSA healthcare system, which covers 51% of Peruvians) [[8], [9], [10]]. Both centers, located in Lima, are the main national referral centers for all Peruvian hospitals belonging to their respective healthcare systems.

The age-adjusted CHD mortality rate in Peru (17.6 per 100 ​000 population) is more than four times higher than the one seen at a global level (3.9 per 100 ​000 population) in 2017 [11]. Similar values are described in developing countries in Africa and Asia such as Sudan and Afghanistan [11]. Potential explanations for this excessive mortality include the heterogeneous access to CHD care across the country that leaves many diagnosed late in the course of the disease, centralized care in Lima that decreases access in the most remote regions (Loreto, Huanuco, San Martin, Huancavelica), lack of pediatric cardiologists who can manage these patients before and after referral at a regional level, and limitations in our methodology (incorrect ICD-10 coding). Our heat maps show that the regions of Lambayeque, Arequipa and Tacna have both high outpatient CHD visits and CHD-related mortality, highlighting the need for regional CHD centers.

Future interventions aiming to decrease the high mortality rate seen in Peru can target increasing early detection via fetal echocardiogram and neonatal pulse-oximetry across all regions (including The Andes); leveraging technology to increase access to remote echocardiography and strengthening coordination of care and the referral system working jointly with the Peruvian Air Force, public-private associations and regional governments [[12], [13], [14]]. Additionally, quality improvement projects focused on surgical and intensive care management as well as an urgent investment in human resources and trained personnel (i.e. currently, there are 0.6 pediatric cardiovascular surgeons per million population in the country) should be considered [15,16]. More importantly, ensuring longitudinal follow-up of pediatric patients will be of extreme importance as they approach pregnancy and specific situations affecting adults with CHD. In this regard, technology can be a useful ally for patient and family education and empowerment, promotion of healthy lifestyles, life planning and timely identification of emergency situations [17,18]. However, an urgent increase in current Peruvian internet access rates of 65% (with rural areas reaching only 36%) is sorely needed to appropriately leverage this strategy [19].

The main limitations of this study were the use of a secondary data source from MINSA and that we did not have the total number of patients with CHD but rather the number of total CHD outpatient visits at MINSA from 2002 to 2020 for the analysis. Additionally, this study could not assess the impact of Law 29 ​698 for treatment of orphan and rare diseases (critical CHD are included among these) because despite it was passed in 2011, its regulations became approved in 2019 [20,21].

5. Conclusion

In Peru, CHD outpatient volume has increased significantly over the last two decades, however CHD mortality has remained constant. Children in the first decade of life are the predominant group in both, outpatient CHD volume and mortality.

Disclosures

None.

Funding

Self-funded

Declaration of competing interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Footnotes

“All authors take responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation”.

Appendix A

Supplementary data to this article can be found online at https://doi.org/10.1016/j.ijcchd.2022.100334.

Appendix A. Supplementary data

The following are the Supplementary data to this article:

Multimedia component 1
mmc1.docx (14.1KB, docx)
Multimedia component 2
mmc2.docx (15.6KB, docx)

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