Patient Preference and Adherence (Aug 2023)
Experiences of Heart Failure and the Treatment Journey: A Mixed-Methods Study Among Patients with Heart Failure in Sweden
Abstract
Maria Liljeroos,1,2,* Björn Agvall,3,* Daniel Eek,4,* Michael Fu5,* 1Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden; 2Centre for Clinical Research Sörmland, Uppsala University, Eskilstuna, Sweden; 3Department of Research and Development, Region Halland, Halmstad, Sweden; 4Cardiovascular, Renal and Metabolism, Medical Department, BioPharmaceuticals, AstraZeneca, Stockholm, Sweden; 5Section of Cardiology, Department of Medicine, Geriatrics and Emergency Medicine Sahlgrenska University Hospital-Östra Hospital, Gothenburg, Sweden*These authors contributed equally to this workCorrespondence: Daniel Eek, AstraZeneca AB, Karlebyhus B674, Södertälje, SE-15185, Sweden, Tel +46 31 776 3659, Email [email protected]: Qualitative studies that highlight the patient perspective of heart failure (HF) and its impact on the lives of patients are limited. Our study objective was to describe the patient’s perspective on HF, including the diagnosis, treatment journey and healthcare interactions, and how HF impacts patients’ lives and specifically their health-related quality of life (HRQoL) and work capacity.Patients and Methods: This cross-sectional, non-interventional, mixed-methods patient experience study comprised: (i) a quantitative online survey with study-specific questions and assessments of HRQoL and work impairment among 101 patients with HF in Sweden and (ii) 35 qualitative interviews to gain in-depth understanding of the patients’ experiences.Results: Patients were found to experience a highly symptomatic and detrimental impact of HF on their HRQoL and work capacity. Fatigue was the most frequently reported symptom, and it was detrimental to all areas of patients’ lives limiting them mentally, socially, and physically. Two-thirds of patients were not aware of the type of HF they had, one-third did not check their body weight regularly, and around half did not increase their physical exercise as recommended by both guidelines and healthcare practitioners. Patients preferred specialist to primary care, desired greater access to healthcare, and continuity in whom they interact with in primary care.Conclusion: Patients with HF experience a highly symptomatic burden that affects them physically, mentally, and socially. Our study highlights a major gap in patients’ knowledge about HF and HF-related healthcare. These results demonstrate a challenge for the Swedish healthcare system particularly as regards providing patients with continuity, accessibility, and proximity to primary care.Graphical Abstract: Keywords: chronic heart failure, health-related quality of life, patient-reported outcomes, qualitative interviews, patient experience
