Clinician-reported EHRA and NYHA scores only moderately reflect patient-reported quality of life in atrial fibrillation and heart failure

Abstract

Abstract Background In the management of heart failure (HF) and atrial fibrillation (AF), treatment decisions are often made based on the amount and severity of symptoms. It is expected that treating the patients’ symptoms positively impacts the patients’ burden of disease. Clinician-reported symptoms are expected to agree with patient-perceived symptoms. However, patients may value (the impact of) symptoms on their quality of life (QoL) differently to clinicians. Purpose This study aimed to gain insights on how patients perceive the impact of AF and HF on QoL, compared to how clinicians perceive (the impact of) patients’ symptoms. To this end, the clinician-reported severity of symptoms was assessed in relationship with patient-reported QoL within 12 months after diagnosis. Methods Newly diagnosed AF and HF patients were included between November 2014 and January 2023 in four non-academic hospitals situated in the Southeast of the Netherlands. During routine visits to AF- and HF-outpatient clinics trained nurses collected information on among others symptoms and QoL at diagnosis and 12 months of follow-up. Severity of symptoms was determined through a clinician-reported NYHA classification for HF and EHRA score for AF. QoL was assessed through the use of the CareQol questionnaire for HF and AFEQT questionnaire for AF. Medians and interquartile-ranges (IQR) were used to assess symptoms and QoL at diagnosis and 12 months of follow-up. In addition, one-way ANOVA’s were employed to assess difference in symptoms and QoL over a period of 12 months. Results In total, 890 AF patients and 292 HF patients were available for analysis with complete 12 month follow-up information. A moderate correlation was observed between EHRA score and AFEQT at diagnosis and 12 months follow-up (Pearson’s R -0.357 and -0.302, respectively). A comparable correlation was observed between NYHA classification and CareQoL (Pearson’s R 0.290 and 0.491). A clinician-reported improvement in AF or HF symptoms from diagnosis to 12 months follow-up was associated with a patient-reported improvement in QoL (AF: F(762,3) = 25.86, p <.001, and HF: F(256,2) = 8.87, p <.001). When clinicians reported no change or worsening symptoms, no significant changes in QoL were reported by patients. Furthermore, a large variation was observed in patient-reported quality of life, even if clinicians reported no symptoms (i.e. EHRA I / NYHA I) for both AF and HF (Median (IQR); 84.3 (25.1) and 2.49 (1.05), respectively) (Figure 1 & 2). Conclusion In this study only a moderate correlation was observed between clinician-reported symptoms and patient-reported quality of life with large individual variation in patient reported QoL. A clinician-reported worsening of symptoms was not always reflected in a decrease of patients’ QoL. The clinician-reported EHRA and NYHA classification does often not accurately reflect the burden of disease as perceived by patients.