Status Report: Heart Failure Registry 2011

Summary

Heart failure results in substantial morbidity, mortality, and expense; yet, quality of care varies widely and is frequently inadequate. This article reports on the progress, or lack thereof, in establishing a heart failure registry for the Caribbean region.

  • Cardiology Clinical Trials
  • Heart Failure

Heart failure (HF) affects over 5.8 million individuals in the United States (US) and over 23 million worldwide [Lloyd-Jones D et al. Circulation 2010; Bui AL et al. Nat Rev Cardiol 2011]. It results in substantial morbidity, mortality, and expense; yet, quality of care varies widely and is frequently inadequate. Performance improvement registries have been developed to help identify ways to improve quality of care and outcomes for patients with HF in both inpatient and outpatient settings [Fonarow GC. Circ J 2011]. Martin Didier, MD, Medical Consultant, Tapion Hospital, Castries, St. Lucia, reported on progress, or lack thereof, in establishing a HF registry for the Caribbean region.

The Caribbean Cardiac Society (CCS) consists of 18 countries, including England, France, Spain, and the Netherlands. The objective of the registry initiative is to provide information on the characteristics of HF and its management in the Caribbean region. However, the effort to date has encountered many challenges, including lack of funds, staff shortage, lack of coordinators, and no coordinating centers.

The aims of the CCS Survey on HF were to: 1) describe the clinical characteristics of outpatients and inpatients with HF who were followed by representative Caribbean cardiology centers; 2) describe the diagnostics and therapeutics that are undertaken in the evaluation and follow-up of patients with HF; 3) assess the outcomes of patients with HF within a 12-month follow-up period and determine prognostic predictors of their outcomes; 4) evaluate whether disparities in management between countries, if found, affect patient outcomes; and 5) determine the characteristics of patients who require referral if necessary to extraregional facilities.

The survey was designed to be prospective, international, multicenter, and observational. It was expected to last 1 year with three visits (enrollment, 6 months, and 12 months). Participants were to include patients aged <18 years with HF. Cardiology centers were graded according to capabilities or competencies (Table 1).

Table 1.

CCS CV Center Classifications.

The challenges that are mentioned above have prevented the study from taking place. However, opportunities exist to continue the effort. These include collaboration with American colleagues and those from the European Society of Cardiology; memoranda of understanding with regional or international universities and public health programs; partnerships with industry; and European funding through French colleagues.

As Co-Chair of the CCS Cardiac Heart Failure Registry Steering Committee, Dr. Didier recommended that the Committee appoint regional coordinators (English, Spanish, and Dutch); convene a face-to-face registry CCS meeting; involve the Organisation of Eastern Caribbean States (OECS); access funding; and continue efforts through 2013.

Four registries in the US collect data on clinical characteristics, admission, hospital and/or outpatient care, discharge, and outcomes. Those who are part of the registry make frequent use of web-based tools that provide real-time performance feedback, national data, and other benchmarked quality measures [Fonarow GC. Circ J 2011].

Participation in performance improvement registries is associated with substantial improvements in the use of guideline-recommended therapies for HF in both inpatient and outpatient settings. Conformity with HF quality measures also improves treatment and reduces or eliminates disparities in care. Registries have also been linked to improvements in clinical outcomes [Fonarow GC. Circ J 2011].

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