Objectives: Heart failure is a common cause of unplanned hospital admissions but there is little evidence on why, despite evidence based interventions, admissions occur. This study aimed to identify critical points on patient pathways where risk of admission is increased and identify barriers to the implementation of evidence based interventions.
Design: Multi-centre, longitudinal, patient-led ethnography.
Setting: NHS settings across primary, community and secondary care in three geographical locations in England, United Kingdom. Participants 31 patients with severe or difficult to manage heart failure followed for up to 11 months; 9 carers; 55 health care professionals.
Results Fragmentation of health care, inequitable provision of services and poor continuity of care presented barriers to interventions for heart failure. Critical points where a reduction in the risk of current or future admission occurred throughout the pathway. At the beginning some patients did not receive a formal clinical diagnosis, in addition patients lacked information about heart failure, self-care and knowing when to seek help. Some clinicians lacked knowledge about diagnosis and management. Misdiagnoses of symptoms and discontinuity of care resulted in unplanned admissions. Approaching end of life, patients were admitted to hospital when other options including palliative care could have been appropriate.
Conclusions Findings illustrate the complexity involved in caring for people with heart failure. Fragmented health care and discontinuity of care added complexity and increased the likelihood of sub-optimal management and unplanned admissions. Diagnosis and disclosure is a vital first step for the patient in a journey of acceptance and learning to self care/monitor.
CORE (COnnecting REpositories)
CORE (COnnecting REpositories)