I H Kraai1, K M Vermeulen2, H L Hillege3, T Jaarsma4. 1. Department of Cardiology, University Medical Center Groningen, University of Groningen, The Netherlands. Electronic address: i.h.kraai@xs4all.nl. 2. Department of Epidemiology, University Medical Center Groningen, University of Groningen, The Netherlands. 3. Department of Cardiology, University Medical Center Groningen, University of Groningen, The Netherlands. 4. Department of Social and Welfare Studies, Faculty of Medicine and Health Sciences, Linköping University, Linköping, Sweden; Mary MacKillop Institute, Australian Catholic University, Melbourne, Australia.
Abstract
BACKGROUND: Knowledge of patient reported outcomes helps to provide personalized care on a patient level, optimize care on a population level, and identify the most appropriate patient reported outcomes for clinical trials. To be able to provide personalized care to patients with HF, it is important to know which treatment goals patients with HF consider the most important. This is particularly useful for interventions aimed at improving symptoms, functional status, or health-related quality of life. AIM: The aim of this study was (1) to explore which treatment goals patients with heart failure (HF) perceive as important for their treatment and (2) to identify which treatment goals take priority over other treatment goals. METHODS: The study had a qualitative design and included one focus group interview with 6 patients with HF. Data were analyzed using qualitative content analysis. RESULTS: The overall theme of this study was found to be 'Not getting worse'. This theme was composed of 4 categories that described how the patients perceived the goals of treatment: to decrease symptoms, to improve physical function, to prevent readmission, and to live a normal life. None of the participants mentioned improved survival or being cured of their HF as a treatment goal. CONCLUSION: 'Not getting worse' was perceived as the treatment goal that matters to patients with HF and is in line with currently used endpoints for the evaluation of a treatment in a clinical trial. More research is necessary to develop endpoints that are consistent with the perception of patients, useful for clinical practice, and measurable.
BACKGROUND: Knowledge of patient reported outcomes helps to provide personalized care on a patient level, optimize care on a population level, and identify the most appropriate patient reported outcomes for clinical trials. To be able to provide personalized care to patients with HF, it is important to know which treatment goals patients with HF consider the most important. This is particularly useful for interventions aimed at improving symptoms, functional status, or health-related quality of life. AIM: The aim of this study was (1) to explore which treatment goals patients with heart failure (HF) perceive as important for their treatment and (2) to identify which treatment goals take priority over other treatment goals. METHODS: The study had a qualitative design and included one focus group interview with 6 patients with HF. Data were analyzed using qualitative content analysis. RESULTS: The overall theme of this study was found to be 'Not getting worse'. This theme was composed of 4 categories that described how the patients perceived the goals of treatment: to decrease symptoms, to improve physical function, to prevent readmission, and to live a normal life. None of the participants mentioned improved survival or being cured of their HF as a treatment goal. CONCLUSION: 'Not getting worse' was perceived as the treatment goal that matters to patients with HF and is in line with currently used endpoints for the evaluation of a treatment in a clinical trial. More research is necessary to develop endpoints that are consistent with the perception of patients, useful for clinical practice, and measurable.
Authors: Julia Frost; Jennifer Wingham; Nicky Britten; Colin Greaves; Charles Abraham; Fiona C Warren; Kate Jolly; Patrick Joseph Doherty; Jackie Miles; Sally J Singh; Kevin Paul; Rod Taylor; Hasnain Dalal Journal: BMJ Open Date: 2019-08-02 Impact factor: 2.692