Prognostic factors associated with quality of life in heart failure patients considering the use of the generic EQ-5D-5L™ in primary care: new follow-up results of the observational RECODE-HF study

BACKGROUND: The implementation of care concepts fitting the needs of patients with chronic heart failure (HF) remains challenging. In this context, psycho-emotional well-being is not routinely assessed, and under-researched despite indications that it is of great relevance for, e.g., acceptance, adherence, and prognosis. The aim of this study was to observe clinical characteristics for their prognostic utility in HF patients, and to compare the patients’ health-related quality of life (QoL) with German population norm values. METHODS: The current post-hoc analysis was performed on data collected amongst participants of the RECODE-HF study who had fully answered the EQ-5D-5L™ items at both baseline and 12 months (n = 2354). The status in the patients’ self-assessment items, EQ-5D visual analog scale (VAS) and EQ-5D index was categorized into worse/unchanged/improved. General linear mixed models (GLMM) with logit link were applied. Subgroups included 630 patients (26.8%) screened positive and 1724 patients (73.2%) screened negative for psychosocial distress (PSD). RESULTS: The 12-months change in EQ-5D index, generally resulting from change in individual EQ-5D items, additionally associated not only with high NYHA class but sociodemographics (employment/living alone/GP practice years) (96.2% correctly classified in GLMM). The 12- months change in individual QoL aspects showed associations with age*NYHA, gender, body-mass index, and comorbidities dyslipidemia, myocardial infarction, asthma/chronic pulmonary disease. Important social roles were reflected in particular when HF patients lived alone or the doctor mentioned to the patient that the patient had HF. Patients with/without PSD differed in some sociodemographic and clinical parameters. However, no influence of PSD could be demonstrated in the 12-month follow-up of the EQ-5D-5L™. Nonetheless, comparison of the 12-months QoL with general German population norm values by age groups < 75 years and 75+ showed markedly health restrictions in HF patients in all EQ-5D-5L™ aspects. CONCLUSION: Our analysis revealed different prognostic factors primarily associated with change of burden in different QoL aspects in HF patients. In GP practice it is important to consider in addition to the overall day-related VAS all the individual health-related QoL aspects to take a holistic view of the patient, as well as to pay particular attention to the interrelation of individual characteristics. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12875-021-01554-1.