Heart failure (HF) has emerged as a global pandemic with 26 million people affected and an estimated health expenditure of US$31 billion worldwide. The hospital-based registries of HF provide key information on patient characteristics, prevailing treatment practices, and survival data. Although the prognosis of HF patients with reduced ejection fraction (HFrEF) has improved due to the availability of evidence-based therapies, the readmission rates, and subsequent mortality, remain unchanged in the last two decades. Additionally, the proportion of HF patients with preserved ejection fraction (HFpEF) is rising rapidly, and their prognosis is equally bad.
The HF burden in a low- and middle-income country (LMIC) settings is unique and different from the pattern in high-income countries. The "double burden" of HF is well documented in LMIC. For example, the persistence of the "preceding era" diseases like rheumatic heart disease and untreated congenital heart diseases along with "modern era" conditions, such as ischemic heart diseases, are propelling the burden of HF in LMIC. However, the description of the HF burden in LMIC is beleaguered by poor availability and quality of data.
Sparse clinical and demographic data on HF is a concern in India. The major HF registries reported in India are the "Trivandrum Heart Failure Registry," which enrolled 1205 patients (THFR) and the INTER-CHF registry with 858 Indian patients. The ongoing Kerala HF registry also has completed the recruitment of 7500 patients. Another registry from a hospital in the National capital region included over 6000 HFrEF patients. The available data from these registries show that HF patients in India are younger by 10-years, and the majority of the burden lies below 65years of age, as compared to the patients from high-income countries. However, none of them represents data from different geographical regions in India. Significant disparities in health burden are well documented between the different states and regions of India. To bridge this gap and to collect representative data, we initiated the National Heart Failure Registry (NHFR). The NHFR is financially supported by the Indian Council of Medical Research (ICMR).
The HF burden in a low- and middle-income country (LMIC) settings is unique and different from the pattern in high-income countries. The "double burden" of HF is well documented in LMIC. For example, the persistence of the "preceding era" diseases like rheumatic heart disease and untreated congenital heart diseases along with "modern era" conditions, such as ischemic heart diseases, are propelling the burden of HF in LMIC. However, the description of the HF burden in LMIC is beleaguered by poor availability and quality of data.
Sparse clinical and demographic data on HF is a concern in India. The major HF registries reported in India are the "Trivandrum Heart Failure Registry," which enrolled 1205 patients (THFR) and the INTER-CHF registry with 858 Indian patients. The ongoing Kerala HF registry also has completed the recruitment of 7500 patients. Another registry from a hospital in the National capital region included over 6000 HFrEF patients. The available data from these registries show that HF patients in India are younger by 10-years, and the majority of the burden lies below 65years of age, as compared to the patients from high-income countries. However, none of them represents data from different geographical regions in India. Significant disparities in health burden are well documented between the different states and regions of India. To bridge this gap and to collect representative data, we initiated the National Heart Failure Registry (NHFR). The NHFR is financially supported by the Indian Council of Medical Research (ICMR).
Methodology
Objectives of the National Heart Failure Registry (NHFR)
The objectives of the study are (i) to establish a representative national HF registry in India and study the demographic characteristics, etiology, and modes of presentation of patients admitted with acute decompensated heart failure, (ii) to study the current practices in management of HF, including diagnostic and treatment patterns, (iii) to assess the short-term and long-term mortality outcomes of HF in India, and (iv) to develop a risk prediction/stratification algorithm for survival of HF patients in India.
Design, sampling, and participating centers
NHFR is a registry of acute decompensated HF patients admitted to the participating hospitals in India during the study period from January 2019 to December 2019. Initially, we identified nine leading cardiology centers as nodal centers across different regions of India. The nodal centers were premier, government-funded medical institutes in the public domain, with adequate experience and expertise in conducting epidemiological studies. The Principal Investigator (PI), who is an experienced researcher and cardiologist at the nodal center, further identified five hospitals (called participating centers), which cater to in-patients with HF in their respective regions. We ensured the representation from different geographical and ethnic diversities in the region while selecting the participating centers.
A total of 53 hospitals from 24 states and 2 union territories took part in the NHFR. The Nodal centers and the five participating centers under each of them were asked to register all consecutive acute decompensated HF patients admitted in their respective hospitals during the study period. We used the European Society of Cardiology (ESC) 2016 criteria for HF diagnosis. Each center was asked to register 200 consecutive patients with the intention to collect data from >10,000 HF patients during the study period. Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum (SCTIMST), acted as the national coordinating center for the NHFR.
The objectives of the study are (i) to establish a representative national HF registry in India and study the demographic characteristics, etiology, and modes of presentation of patients admitted with acute decompensated heart failure, (ii) to study the current practices in management of HF, including diagnostic and treatment patterns, (iii) to assess the short-term and long-term mortality outcomes of HF in India, and (iv) to develop a risk prediction/stratification algorithm for survival of HF patients in India.
Design, sampling, and participating centers
NHFR is a registry of acute decompensated HF patients admitted to the participating hospitals in India during the study period from January 2019 to December 2019. Initially, we identified nine leading cardiology centers as nodal centers across different regions of India. The nodal centers were premier, government-funded medical institutes in the public domain, with adequate experience and expertise in conducting epidemiological studies. The Principal Investigator (PI), who is an experienced researcher and cardiologist at the nodal center, further identified five hospitals (called participating centers), which cater to in-patients with HF in their respective regions. We ensured the representation from different geographical and ethnic diversities in the region while selecting the participating centers.
A total of 53 hospitals from 24 states and 2 union territories took part in the NHFR. The Nodal centers and the five participating centers under each of them were asked to register all consecutive acute decompensated HF patients admitted in their respective hospitals during the study period. We used the European Society of Cardiology (ESC) 2016 criteria for HF diagnosis. Each center was asked to register 200 consecutive patients with the intention to collect data from >10,000 HF patients during the study period. Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum (SCTIMST), acted as the national coordinating center for the NHFR.
Inclusion, and exclusion criteria
We used the European Society of Cardiology (ESC) 2016 guidelines for the diagnosis of HF. The inclusion criteria of NHFR enrolment are given below. Patients who had septicemia as their primary diagnosis were excluded from the study.
1)Age ≥18 years
2)Indian citizen
3)Confirmation of heart failure
1)Age ≥18 years
2)Indian citizen
3)Confirmation of heart failure
- Symptoms and signs of heart failure along with LVEF <40% for heart failure with reduced ejection fraction (HFrEF).
- Symptoms and signs of heart failure along with LVEF 40%–49% for heart failure with mid-range ejection fraction (HFmrEF).
- Symptoms and signs along with LVEF >50% and structural heart disease by echo (LVH or LAE) or LV diastolic dysfunction for Heart failure with preserved ejection fraction (HFpEF).
- Isolated right heart failure with symptoms and signs.
Impact
There is limited data from LMIC on HF. Although there are few hospital-based studies from India, they are relatively small and also limited to either big teaching hospitals or small geographic areas. We aim to collect data of 10,000 patients across twenty-four different states and two union territories of India. The baseline demographic and clinical characteristics, etiology, and one-year survival of HF patients may help to influence policies to reduce HF-related burden and mortality in India.