16 Hospitalisation with acute heart failure: the patient’s view: results from a qualitative study of the acute heart failure pathway

Abstract

Unplanned ED visits and admissions are expensive for healthcare systems and often stressful for the patient and family. To improve the use of healthcare resources and the patient experience of care the Global Heart Failure Awareness Programme (HFA of the ESC) emphasises increasing public awareness of the common symptoms of heart failure (HF) and empowering and supporting those with HF to actively engage in their care. This study explored the experiences of patients and GPs. Patients were recruited following an unplanned HF admission to Hospital. The established HF Unit provides monitoring, optimises therapies and provides patient education for 3 months post discharge. We also interviewed General Practitioners (GPs). Data were collected by semi-structured interview and analysed using an inductive, thematic process involving constant comparison. Twenty-four patients were recruited: Mean age of 81 years: 12 (50%) > 80 years: 10 (41%) > 85 years: Male 15 (63%), 9 (37%) de-novo HF, 17 (71%) had more than 3 co-morbidities and 8 (33%) > 3 non-cardiovascular co-morbidities. 11 (46%) lived alone. 6/15 patients with an existing diagnosis of HF had >3 admissions in the past 12 months. Seven GPs took part in the study. Key themes Understanding of HF Patients had a limited understanding of HF. They interpreted their symptoms as related to co-morbid conditions or age: breathlessness due to lung disease: fatigue due to older age. These symptoms did not fit with patient’s views of HF (palpitations or chest pain) or their view of the type of person who developed HF (sedentary lifestyle). This understanding appeared derived from a general knowledge of heart disease portrayed in the media. Continuity of care Patients described a close relationship with their GP that developed from regular monitoring related to comorbidities, on-going medication review, geographical proximity and ease of access. They viewed the GP as a ‘trusted’ source of knowledge. The majority turned to the GP when they sought resolution for symptoms. Following hospital discharge the HFU scheduled face-to-face and telephone follow-up. Patients appreciated the regular contact and were reassured by their monitoring. Fragmentation of care GP’s described barriers to obtaining diagnostic tests. This left them unable to give patients a formal diagnosis or start conversations about HF. Patients described limited access to the HFU for support or information. Some experienced frustration as they attempted to navigate between systems: HFU, GP and ED. Patients in this study were elderly. They had multiple co-morbidities that led to a reliance on the GP. Their limited knowledge of HF resulted in them identifying HF symptoms as related to co-morbid conditions. Fragmentation of care between primary and secondary care were barriers to prompt treatment and to provision of on-going information and supportive resources. These factors contributed to unplanned hospital admission and provided a negative experience of care. These results are now being tested in a larger population and different healthcare organisation.