Diagnosis, mortality and professional life in patients with heart failure

Background: Heart failure (HF) is a common and severe disease with an increasing incidence among young adults. An emerging composite endpoint is home-time. Little is known, on how living with HF affects professional life. Methods and results: In Paper I, we used medical records of 965 of patients 20-100 years with HF 2000-2012 to validate the diagnosis according to the European Society of Cardiology´s current guidelines. The diagnosis was validated as definite, probable, and miscoded HF in 601 (62.3%), 310 (32.1%) and 54 (5.6%) cases, respectively. In Paper II and III, we used the National patient register, the Cause of Death Register, and the Longitudinal integrated database for health insurance and labour market studies (LISA). In Paper II, home-time during 4-years follow-up was calculated for 388 775 patients 18-84 years, 1992-2012. Home-time increased over the study period for both age groups. Patients 18-64 years had more home-time than those 65-84 years (83.8% vs. 68.2%), mainly due to lower 4-year mortality rate (14.2% vs. 29.7%). In Paper III, time on sickness benefit during 2-year follow-up was estimated for patients and controls 18-60 years, 1995-2016. Sickness benefit time declined over the study period for both groups, with a steeper decline for patients. In Paper IV, patients 16-<55 years diagnosed with HF or dilated cardiomyopathy 1997-2016, had their records examined and 294 patients still alive and living nearby, participated. Two thirds of patients were male, mean BMI was elevated. Patients in blue-collar, compared to white-collar occupations were significantly more weighed down by thoughts of work at home, and had a lower working capacity in relation to physical demands, but were not more often on current sick leave. Conclusion: Validity of the HF-diagnosis was high, supporting the use of this register in HF-research. Patients with HF in Sweden had an increasing home-time over two decades and young patients had more home-time than older patients. Time on sickness-benefit was higher for ...