Quality of life and disease experience in patients with heart failure with reduced ejection fraction in Spain: a mixed-methods study

Abstract

ObjectivesTo gather insights on the disease experience of patients with heart failure (HF) with reduced ejection fraction (HFrEF), and assess how patients’ experiences and narratives related to the disease complement data collected through standardised patient-reported outcome measures (PROMs). Also, to explore new ways of evaluating the burden experienced by patients and caregivers.DesignObservational, descriptive, multicentre, cross-sectional, mixed-methods study.SettingSecondary care, patient’s homes.ParticipantsTwenty patients with HFrEF (New York Heart Association (NYHA) classification I–III) aged 38–85 years.MeasuresPROMs EuroQoL 5D-5L (EQ-5D-5L) and Kansas City Cardiomyopathy Questionnaire and patient interview and observation.ResultsA total of 20 patients with HFrEF participated in the study. The patients’ mean (SD) age was 72.5 (11.4) years, 65% were male and were classified inNYHA functional classes I (n=4), II (n=7) and III (n=9). The study showed a strong impact of HF in the patients’ quality of life (QoL) and disease experience, as revealed by the standardised PROMs (EQ-5D-5L global index=0.64 (0.36); Kansas City Cardiomyopathy Questionnaire total symptom score=71.56 (20.55)) and the in-depth interviews. Patients and caregivers often disagreed describing and evaluating perceived QoL, as patients downplayed their limitations and caregivers overemphasised the poor QoL of the patients. Patients related current QoL to distant life experiences or to critical moments in their disease, such as hospitalisations. Anxiety over the disease progression is apparent in both patients and caregivers, suggesting that caregiver-specific tools should be developed.ConclusionsPROMs are an effective way of assessing symptoms over the most recent time period. However, especially in chronic diseases such as HFrEF, PROM scores could be complemented with additional tools to gain a better understanding of the patient’s status. New PROMs designed to evaluate and compare specific points in the life of the patient could be clinically more useful to assess changes in health status.

Health‐related quality of life among transthyretin amyloid cardiomyopathy patients

“…Previous reports in heart failure patients have also documented association between NYHA and KCCQ as well as between NYHA and EQ‐5D‐5L. 33 , 43 , 44 , 45 To our knowledge, the Nordic PROACT study is the first to investigate correlations between NAC staging and different HRQoL measures.…”

“…Previous reports in heart failure patients have also documented association between NYHA and KCCQ as well as between NYHA and EQ-5D-5L. 33,[43][44][45] To our knowledge, the Nordic PROACT study is the first to investigate correlations between NAC staging and different HRQoL measures. Though both methods of classifying disease severity correlated well to the analysed PROMs, NYHA classes showed a stronger correlation than NAC stages, in that the correlation between NYHA classes and the individual PROMs stayed significant after Bonferroni correction.…”

The Impact of Cardiac Devices on Patients’ Quality of Life—A Systematic Review and Meta-Analysis

“…The same was true for many data on baseline patient characteristics and outcome parameters. Many studies from our analysis did not include or report data on patient’s functional heart failure status (e.g., NYHA class) or LV function although these factors already have been proven extensively to have a large impact on quality of life [ 79 , 80 ]. However, many of the included trials either showed data on medical outcome (improvement of functional NYHA class, improvement of measured LV function) or parameters of psychological well-being (quality of life, mental diseases).…”

Evaluation of Satisfaction with Healthcare Services in Multimorbid Patients Using PACIC+ Questionnaire: A Cross-Sectional Study

“…HF is a long-term debilitating disease that severely affects the quality of life by the need for hospitalizations, reduced ability to undertake daily living activities, and disturbed psychosocial well-being. The limitations in patients with HF may be even more expressed compared to those with other chronic conditions such as diabetes, cancer, or Alzheimer’s disease [ 47 ]. This may have translated into lower satisfaction with healthcare in HF patients.…”