Understanding the concerns of people living with Heart Failure in Portugal - a qualitative approach

Abstract

Abstract Background Heart failure (HF) is a complex chronic clinical syndrome that results of cardiac functional impairment secondary to many aetiologies, leading to significant struggles to an optimal care management. Person-centred care is an effective approach to integrate care and shared decision-making. Understanding the health concerns of the people with the disease, is fundamental to adapt and establish an integrated disease management. This study aims to comprehensively identify the main concerns of people living with HF. Methods Three focus group and two group interviews were conducted, involving 23 individuals where: 12 were people with HF and 11 healthcare professionals (HCP) following people with HF in Portugal. A convenience sampling (nonprobabilistic) was used to maximize the differences within participants’ characteristics. The inclusion criteria for people with HF were documentation of reduced or preserved ejection fraction, with or without decompensation for more than one year with different NYHA classifications. Regarding HCP were included physicians and nurses following people with HF. Data were analysed using thematic analysis and performed in MAXQDA®. Results Following data analysis, nine themes of concern were identified. Each theme was composed of several items of concern (codes) and were related to: 1) personal and family; 2) monetary costs; 3) changes in lifestyle; 4) autonomy and functionality; 5) health status; 6) symptoms and signs; 7) medication; 8) surgical procedures; 9) healthcare. Conclusions Several aspects of the daily life of the person with HF were identified. Those were not limited to concerns related to clinical conditions. Data reinforce the complexity of HF with several and broad implications in daily life. Based on these results we recommend a quantitative approach to measure the relevance and impact of each concern, enhancing the creation of more effective healthcare strategies that prioritize people’ needs and management. Key messages • The concerns of people with HF are not limited to clinical aspects, they cover several areas of the person's daily life. • Heart Failure is a complex, high-prevalence disease, with several implications in daily-life, requiring specific coping mechanisms to face different challenges.