Abstract
AimsThe prognosis of patients hospitalized for worsening heart failure (HF) is well described, but not that of patients managed solely in non‐acute settings such as primary care or secondary outpatient care. We assessed the distribution of HF across levels of healthcare, and assessed the prognostic differences for patients with HF either recorded in primary care (including secondary outpatient care) (PC), hospital admissions alone, or known in both contexts.Methods and resultsThis study was part of the CALIBER programme, which comprises linked data from primary care, hospital admissions, and death certificates for 2.1 million inhabitants of England. We identified 89 554 patients with newly recorded HF, of whom 23 547 (26%) were recorded in PC but never hospitalized, 30 629 (34%) in hospital admissions but not known in PC, 23 681 (27%) in both, and 11 697 (13%) in death certificates only. The highest prescription rates of ACE inhibitors, beta‐blockers, and mineralocorticoid receptor antagonists was found in patients known in both contexts. The respective 5‐year survival in the first three groups was 43.9% [95% confidence interval (CI) 43.2–44.6%], 21.7% (95% CI 21.1–22.2%), and 39.8% (95% CI 39.2–40.5%), compared with 88.1% (95% CI 87.9–88.3%) in the age‐ and sex‐matched general population.ConclusionIn the general population, one in four patients with HF will not be hospitalized for worsening HF within a median follow‐up of 1.7 years, yet they still have a poor 5‐year prognosis. Patients admitted to hospital with worsening HF but not known with HF in primary care have the worst prognosis and management. Mitigating the prognostic burden of HF requires greater consistency across primary and secondary care in the identification, profiling, and treatment of patients. Trial registration: NCT02551016
Highlights
Management of chronic diseases with acute exacerbations, such as heart failure (HF), is often fragmented across primary and secondary care.[1,2,3,4] Yet, most clinical trials and registries that have guided HF care and informed patients about their prognosis have had a HF-related hospitalization as a prerequisite for study enrolment
The challenge to prognosticate heterogeneous diseases such as HF was recently reinforced by data from the Swedish healthcare system, showing that patients included in trials were poorly representative of patients with HF encountered in the general population, and approximately one in three such patients had never been hospitalized for HF.[6]
Among patients with both HF recorded in primary care and hospital admissions, 38% were first recorded during hospitalization and the median time for an accompanying record of HF in PC was 29 days [interquartile range (IQR) 10–190 days] (Supplementary material online, Figure S3)
Summary
Management of chronic diseases with acute exacerbations, such as heart failure (HF), is often fragmented across primary and secondary care.[1,2,3,4] Yet, most clinical trials and registries that have guided HF care and informed patients about their prognosis have had a HF-related hospitalization as a prerequisite for study enrolment. The challenge to prognosticate heterogeneous diseases such as HF was recently reinforced by data from the Swedish healthcare system, showing that patients included in trials were poorly representative of patients with HF encountered in the general population, and approximately one in three such patients had never been hospitalized for HF.[6] Data from Sweden and other population-based studies from various countries are increasingly available.[6,7,8] to date, most studies that report on prognosis of HF produced survival estimates for HF in general,[9,10,11,12,13,14] acute hospital admissions,[15,16,17,18,19] or stratified for cardiac systolic dysfunction[20,21,22,23,24] (i.e. reduced-, mid-, or preserved range of LVEF) for example. We hypothesize that prognostication of HF can merit from strata based on level of care to allow assessment of novel patient groups, such as patients known with HF in ambulatory care (i.e. primary or outpatient secondary care) who have not been hospitalized with HF for example, or vice versa
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