Discrepancies between proxy estimates and patient reported, health related, quality of life: minding the gap between patient and clinician perceptions in heart failure.

PURPOSE: Health related quality of life (HRQoL) is rarely routinely measured in the clinical setting. In the absence of patient reported data, clinicians rely on proxy and informal estimates to support clinical decisions. This study compares clinician estimates (proxy) with patient reported HRQoL in patients with advanced heart failure and examines factors influencing discrepancies. METHODS: Seventy-five patients with heart failure, (22 females, 53 males) completed the EQ-5D-5L questionnaire. Thirty-nine clinicians (11 medical, 23 nursing, 5 allied health) completed the proxy version (V1) producing 194 dyads. Correlation was assessed using Spearman's rank tests, systematic bias was examined with Bland-Altman analyses. Inter-rater agreement at the domain level, was investigated using linear weighted Kappa statistics while factors influencing the IRG were explored using independent student t-tests, analysis of variance and regression. RESULTS: There was a moderate positive correlation between clinician HRQoL estimates and patient reported utility (r = 0.38; p < .0005). Mean clinician estimates were higher than patient reported utility (0.60 vs 0.54; p = 0.008), with significant underestimation of reported problems apparent in three of the five EQ-5D-5L domains. Patient sex (female), depressed mood and frailty were all associated with an increased inter-rater gap. CONCLUSION: Clinicians in this sample overestimated HRQoL. Factors affecting the inter-rater gap, including sex and depression, support formal HRQoL screening to enhance clinical conversations and decision making. The discrepancy also supports regulatory restriction on the use of expert opinion in the development of QALYs in health economic analysis.

Long distance heart transplantation: a tale of two cities.

In this 'paired' case report, we describe two heart transplants performed 3 days apart at our centre. Both cases involved very prolonged transportation time of the donor heart. In one case, the donor heart was transported in an ice chest, while in the other case the organ was transported using a normothermic ex vivo perfusion (NEVP) system. The additional retrieval costs incurred by the use NEVP were more than offset by the reduction in subsequent inpatient costs.

Six-minute walk distance predicts VO2 (max) in patients supported with continuous flow left ventricular assist devices.

BACKGROUND: Six-minute walk distance (6MWD) and maximal oxygen uptake (VO2 max ) are used as prognostic tools in patients with heart failure (HF). Whether these tests provide similar information in the LVAD population is not known. METHODS: Eight patients supported with VentrAssist rotary blood pump LVADs, underwent three days of testing that included 6MWD and VO2 max at normal, high or low speeds, generating twenty-four paired results. RESULTS: The mean 6MWD was 438 (+/- 90 SD) m and the mean VO2 (max) was 14.12 (+/-1.87) ml/kg/min. There was a modest correlation between VO2 (max) and 6MWD (r = 0.56 p = 0.004), which improved (r = 0.72 p = 0.002) when patients with higher resting Pro BNP levels and larger left ventricular end diastolic diameters (LVEDD) were excluded. CONCLUSIONS: 6MWD is correlated with VO2 (max) in LVAD supported patients, with higher correlations in patients with better underlying cardiac function.