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

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.

Understanding flare in axial spondyloarthritis: novel insights from daily self-reported flare experience

Objectives Our objective was to explore daily self-reported experience of axial spondyloarthritis (axSpA) flare based on data entered into the Project Nightingale smartphone app (www.projectnightingale.org), between 5th April 2018 - 1st April 2020. Methods Paired t-tests were conducted for mean_flare_on and mean_flare_off scores for each recorded variable. Mean estimated difference between flare and non-flare values for each variable was calculated with 95% confidence intervals (CI). Mean, standard deviation (SD) and range were reported for flare duration and frequency. Participants with ≥10 days of data entry were included for affinity propagation cluster analysis. Baseline characteristics and mean flare on versuss flare off values were reported for each cluster. Welch’s t-test was used to assess differences between clusters. Results 143/189 (75.7%) participants recorded at least 1 flare. Each flare lasted a mean of 4.30 days (SD 6.82 days, range 1–78 days), a mean frequency of once every 35.32 days (SD 65.73, range 1–677 days). Significant relationships were identified between flare status and variable scores. Two clusters of participants were identified with distinct flare profiles. Group 1 experienced less severe worsening of symptoms during flare in comparison to Group 2 (p < 0.01). However, they experienced significantly longer flare duration (7.2 versuss 3.5 days, p < 0.01); perhaps indicating a prolonged, yet less intense flare experience. Groups were similar in terms of flare frequency and clinical characteristics. Conclusions Two clusters of participants were identified with distinct flare experiences, but similar baseline clinical characteristics. Smartphone technologies capture subtle changes in disease experience, not currently considered in clinical practice.