Point of View

104 Grover et al. Burden of Rheumatic and Congenital Heart Disease Indian Heart J 2002; 54: 104–107

Burden of Rheumatic and Congenital

Heart Disease in India: Lowest Estimate
Based on the 2001 Census
Anil Grover, Rajesh Vijayvergiya, Shyam T Thingam
Departments of Cardiology and Cardiothoracic Surgery, Postgraduate Institute of
Medical Education and Research, Chandigarh

R oget’s thesaurus equates “burden” with “load” and

“responsibility”. This article discusses the load of
rheumatic heart disease (RHD) and congenital heart disease
(CHD) in India, and also the responsibilities of cardiologists,
cardiothoracic surgeons and health planners to deal with
this load with the available resources.
Each newborn is a responsibility of the immediate family,
the society and finally, the nation. During a lifetime and
even during the months prior to birth, any individual may
develop heart disease, or acquire a lifestyle pattern or
environment that fast-tracks him/her to develop heart
disease. It is important for primary care physicians,
specialists working in tertiary care centers and health
planners to know the extent of the total cardiovascular
disease burden. In the Indian context, this not only includes
ischemic heart disease (IHD) but a significant number of
cases of CHD and RHD as well. The literature tends to
discuss only IHD and omits the significant burden of RHD
and CHD.1 The latter two diseases contribute significantly
to the total burden, and require adequate manpower,
resources and facilities for the care of suffering patients.
Recent reports suggest that about two-thirds of in-hospital
cardiac patients have RHD and CHD, and one-third have
IHD.2,3 Thus, the emphasis of this article is limited to RHD
and CHD.
Data Sources
Health statistics in India, as in any other developing country,
are not easily available and when available, lack precision
and accuracy. Therefore, multiple sources of information
were used and cross validation of analytical studies was
carried out to arrive at a figure. For the denominator, the
data from the 1991 and 2001 Censuses were used. To
calculate the lowest estimate of burden of RHD and CHD,
Correspondence: Dr Anil Grover, Department of Cardiology, PGIMER,
Chandigarh 160 012. e-mail: anilgrover444@hotmail.com
we used the following sources for data, in descending order
of reliability:
1. National Census Data 2001 (available online at http://
www.censusindia.net)4
2. Epidemiological data from articles published in peer-
reviewed, indexed journals5–19
3. Autopsy data from tertiary care institutes of India20,21
4. Data from specific registries and monitored clinics,
including the rural Raipurrani registry22 and pediatric
cardiology clinic. Data from the central registration
department of Nehru Hospital affiliated to the
Postgraduate Institute of Medical Education and
Research (PGIMER), Chandigarh, India*
5. Data from company records of medical equipment
manufacturing units —utilization of equipment reflects
the service provided.23
2001 Census Data4
Table 1 shows the total population, crude birth rate and
percentage distribution of the population of various age
groups in relevance to the article. At a crude birth rate of
27.2/1000, the total annual live-births would be 27.93
million. This figure does not include either spontaneous
abortions or stillbirths, which are associated with
significantly higher proportions of serious heart defects
than live-births. Among the latter, approximately 80%
survive the first year and three-fourth survive the first 15
years of life.6,8 Population at risk is defined as a proportion
of the population which is at maximum risk of suffering
from the disease, where a sufficient number of point
*Hospital morbidity and mortality statistics published by the Department
of Biostatics, PGIMER annually details lists of patients examined and their
diagnoses established in various clinics, including the Pediatric Cardiology
Clinic, Adult Cardiac Clinic, and Cardio-Obstetric Clinic. For mortality
statistics, it maintains a proforma filled as per international guidelines,
which not only includes immediate cause, but also antecedent causes
leading to the terminal event.

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 Indian Heart J 2002; 54: 104–107 Grover et al. Burden of Rheumatic and Congenital Heart Disease 105

Table 1. Relevant census data during childhood. Every year, about 121 000 children with
CHD reach the age of 15 years. Of these, one-third would
Data 1991 2001
require long-term follow-up in adult life. These figures
Total population (in millions) 846 1027 predict the need for adult follow-up of CHD of over 425 extra
Crude birth rate (per 1000 population) 30.0 27.2 cases per 100 000 live-births each year.24,25 The number of
% population <15 years of age 37.3 34.3 adult CHD patients is substantial in India because of a lack
% population 5–15 years of age 25.1 23.6 of health awareness, poverty and inadequate health
% population 5–40 years of age 64.9 65.2 manpower and facilities.
About45% of CHD cases require some form of
intervention or surgery during childhood.11 Thus, every
prevalence studies have been conducted and a longitudinal year, nearly 50 000 children require surgery or care at an
follow-up is available in the literature. Additionally, the advanced infant cardiac center. However, in our country
natural history of the disease on the life expectancy of a every child who needs surgery does not get operated. Taking
patient was considered. For the purpose of calculation of the number of pediatric oxygenators used as an indirect
the lowest estimate of CHD, the age group of 0–15 years measure of pediatric cardiac surgeries performed for
was taken to be at risk and for RHD, 5–40 years was taken children below 1 year of age, the number for India is <1000
as the population at risk. for the year 1999.23

Congenital Heart Disease Rheumatic Heart Disease

Congenital heart disease is the most common birth defect India is in the phase of “epidemiological transition”. On the
and affects a large number of children. Research directed one hand, there is a substantial burden due to RHD,
at the cause and “ultimately” possible prevention is an infection and malnutrition and, on the other hand, there
essential component of any agenda to reduce premature are a vast number of cases of IHD, obesity and diabetes
death and morbidity due to cardiovascular disease. The which represent the degenerative and man-made diseases.1
incidence of CHD in various countries and different ethnic The prevalence of RHD has declined in the West but
groups is about the same. The incidence of CHD in infancy continues to be an important cause of cardiovascular
varies from 4 to 12/1000 live-births in various community- morbidity and mortality in India. The prevalence of RHD
and hospital-based studies (Tables 2 and 3).5–12 It is a fact varies from 1.0 to 5.4/1000 schoolchildren (Table 4).
that hospital-based studies estimate a higher prevalence as Considering the median prevalence as well as our
compared to community-based studies. Considering the epidemiological study of a transition area where the
lowest estimate of 4/1000 live-births, approximately population has been followed up for 15 years, a prevalence
112 000 infants with CHD are added every year to the total of 2.1/1000 schoolchildren can be taken for purposes of
pool. calculation.22 Thus, approximately 509 000 children are
The number of cases of CHD recognized in the first year suffering from RHD (23.6% of a total population of 1027
of life is only about two-thirds the number of cases million is 5–15 years of age). This figure excludes RHD
recognized in a population of children followed up till their patients >15 years of age. Based on the RHD prevalence of
teens.6 Thus, an additional 37 000 CHD cases are diagnosed 0.09% in the total population,16,22 about 1 million patients
are suffering from this disease. Among the population 5–
Table 2. Congenital heart disease in defined live-birth 40 years of age at risk for RHD, 1.4 million are presently
population suffering from RHD (Table 3).
The incidence of rheumatic fever (RF) varies from 0.2 to
Author Community/ Total CHD CHD/1000
hospital-based infants (n) live-births
0.75/1000/ year in schoolchildren 5–15 years of age (Table
4).15–19 Considering a median incidence of 0.54/1000/year,
Khalil et al.5 Hospital 10 964 43 3.9
Wren et al.6 Community 377 310 1942 5.2
approximately 131 000 patients suffer from RF every year.
Subramanyan et al.7 Hospital 139 707 992 7.1 On an average, one-third of patients with a possible first
Samanek et al.8 Community 816 569 5030 6.16 attack of RF develop chronic valvular lesions.16,22 Thus,
Roy et al.9 Hospital – – 8.0
approximately 50 000 patients are added every year to the
Robida et al.10 Hospital 49 887 610 12.23
Fixler et al.11 Community 379 561 2509 6.6 total pool of chronic RHD patients.
Bitar et al.12 Hospital – – 11.5 The younger age of onset of RHD seen in India is a special

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 106 Grover et al. Burden of Rheumatic and Congenital Heart Disease Indian Heart J 2002; 54: 104–107

Table 3. Estimated number of patients with congenital and rheumatic heart disease in India

Disease Prevalence Age at risk Population Number of Estimated

rate (%) (age group) at risk (in patients (in annual new
million) million) patients added

CHD 0.4 <15 years 354 1.41 121 000

RHD 0.21 5–40 years 670 1.4 50 000
CHD and RHD – – 1027 2.81 171 000

CHD: congenital heart disease; RHD: rheumatic heart disease

Table 4. Rheumatic fever/rheumatic heart disease status in India

Authors Place Year Age Population RHD prevalence RF incidence

(years) studied (per 1000) (per 1000/year)

ICMR13,14 Ballabgarh 1982–1990 5–15 22 729 1.0 –

ICMR13,14 Varanasi 1982–1990 5–15 12 190 5.4 –
ICMR13,14 Vellore 1982–1990 5–15 13 509 2.9 –
Padmavati15 Delhi (urban) 1984–1994 5–10 40 000 3.9 0.384
Grover16 Raipurrani 1988–1991 5–15 31 200 2.1 0.54
Avasthi17 Ludhiana 1987 6–16 6005 1.3 0.70
Patel18 Anand 1986 8–18 11 346 2.03 0.176
Lalchandani19 Kanpur 2000 7–15 3963 4.54 0.75
RF: rheumatic fever; RHD: rheumatic heart disease

feature of both public health and clinical importance.
Juvenile RHD is a more severe and rapidly progressive
disease. It is associated with significant mitral stenosis,
organic tricuspid valve disease, severe pulmonary artery
hypertension and congestive heart failure.26–28 It is the
commonest heart disease associated with pregnancy and
is found in about 1% of pregnant women.29 The most
common and dominant valvular lesion is mitral stenosis
(72%),29 which leads to significant maternal and fetal
morbidity and mortality.30 These patients require either
balloon mitral valvuloplasty or surgical mitral
commissurotomy. Both procedures are available at limited
centers in India.
Valvular surgery in India is performed mostly for RHD.
During 1999, a total of 6607 valve replacements were
done.23 Of these, 4640 were mitral valve replacements,
1967 aortic valve replacements, and 642 repair/
replacement of other valves. These operations cover only a
fraction of the very large number of patients who need
them. The high cost of prosthetic valves and inadequate
facilities for operative management of these patients are
hindrances to valve replacement surgery. Valve replacement
surgery costs approximately 10 times the average annual
income of a person. There is a need to set up an agency to
provide heart valves at subsidized cost to these poor patients
and lend support to programs aimed at eradicating RHD
from India.
Conclusions
At present, prevention is an established and cost-effective
strategy for RHD. Dissemination of education can
assimilate this into routine health care practice. For CHD,
early detection and awareness of known antenatal risk
factors can probably reduce the incidence. Genetic and
general counseling for all adolescent heart diseases (e.g. RF
and infective endocarditis prophylaxis) as well as advice
about the appropriate timing of surgery is a must. More
emphasis on the establishment of adolescent heart disease
clinics by trained specialists can significantly reduce
morbidity. Advances in biogenetics (such as the RF vaccine)
will probably end these diseases in this millennium.
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