Acute heart failure (AHF) is a common cause of hospitalisation, presenting substantial economic and humanistic burden for healthcare systems and patients. This study was designed to capture proxy UK health-related quality of life (HRQoL) data for hospitalised patients with AHF.
Proxy assessments of HRQoL for patients were obtained from 50 experienced UK cardiac nurses (formal caregivers) and from 50 UK individuals who acted as caregivers for patients who had experienced an AHF event leading to hospitalisation (informal caregivers). Data were collected retrospectively for four time points (days 1, 3, 5 and 7 post-hospital admission for AHF event) using the EQ-5D. Results show a disparity in reported HRQoL at day 1 values between caregiver types (mean single utility index 0.20 vs. 0.68, respectively, p<0.001). By day 7, formal caregivers rated typical patients’ HRQoL as being comparable to informal caregivers’ assessments (0.82 vs. 0.73, respectively, p=0.145). In conclusion, collection of utility data in severe acute conditions is challenging. This study captures values through the use of proxy assessment. Data suggest that AHF hospitalisation is associated with a significant HRQoL burden and that there exists a need for development of new treatments aimed at improving hospitalisation outcomes.
Acute heart failure (AHF) has been defined by the European Society of Cardiology (ESC) as the rapid onset of, or change in, symptoms and signs of heart failure, and is a life-threatening condition that requires immediate medical attention.1 These symptoms and signs include shortness of breath at rest or during exertion, fatigue, pulmonary or peripheral fluid retention, a cough, and evidence of an abnormality of the structure or function of the heart at rest.2-4 This change in cardiac function results in an urgent need for therapy, and AHF is among the most common causes of hospitalisation.5 AHF can, therefore, be seen to represent a huge burden on healthcare resources,6 with the need for hospitalisation in order to stabilise the condition of patients being the single largest contributor to the costs of managing AHF.7 The situation is further worsened in that readmission rates are high following discharge; approaching 50% within six months.8
As well as the substantial economic burden on healthcare services, a diagnosis of AHF is associated with a significant health-related quality of life (HRQoL) burden for patients. When making decisions about allocation of healthcare resources, many decision makers consider the impact of the intervention on both costs and health outcomes.9 Health outcomes are commonly aggregated into quality-adjusted life years (QALYs), which is a metric that combines both survival and quality of life. AHF represents a significant challenge to quality of life for patients, due to a combination of the debilitating effects of the condition and the necessity for hospitalisation. Despite the incidence of the condition and the extent of burden experienced there is a paucity of utility data available for AHF, which could be used in economic analyses.
Most HRQoL assessment relies on self-report from patients, but for individuals who are severely or acutely ill this is often not possible for a variety of practical and ethical reasons. Capturing HRQoL information accurately from individuals who are unable or unwilling to complete appropriate instruments, therefore, poses a challenge. One potential approach to overcoming this issue is through the use of proxy assessment. Proxy measures have been successfully used previously in a number of different patient populations including rehabilitation patients10 and individuals with developmental disabilities.11 These studies have demonstrated agreement between self-reported assessments and those of proxies, but other findings suggest that proxy assessment may be subject to bias and measurement error.12
The purpose of the current study was to capture quality of life data for patients in the days immediately following AHF hospitalisation. Given the practical and ethical challenges posed by collecting data directly from acutely ill patients, a proxy assessment approach was employed in which the caregivers of AHF patients were surveyed. In an attempt to address potential sources of bias, proxy assessments were made both by relatives of patients that had experienced recent AHF and by healthcare professionals who regularly manage patients with the condition.