Feedback on end-of-life care in dementia: The FOLlow-up project.

The FOLlow-up project employs a Randomized Controlled Trial design to test the effect of audit and feedback on the quality of end-of-life care and the quality of dying in dementia. The EOLD-instruments assessing quality of end-of-life care and quality of dying are used in the audit and feedback strategies to invite family caregivers of dementia patients to provide feedback after the death of their relative. Subsequently, nursing homes are instructed and supported to employ the feedback for quality improvement according to the audit- and feedback strategy (i.e., the generic feedback strategy and the patient specific feedback strategy) they were randomly assigned to. A control group collects family evaluations without receiving feedback during the complete period of data collection, while providing their usual care to control for possible changes over time. A mixed-method process evaluation is used to evaluate the interventions among the nursing home staff members who are involved in the study, to increase our understanding on the facilitators and barriers of audit- and feedback strategies to improve quality of palliative care in the nursing home setting.

Implementation of two audit- and feedback strategies, a generic- or a patient-specific strategy in the nursing home practice, using the End-of-Life in Dementia (EOLD) instruments with families evaluating the quality of end-of-life care and quality of dying will improve the quality of end-of-life care and quality of dying in dementia.

Two timepoints.

The generic strategy links cumulative family evaluations with EOLD-scores of a group of patients to specific targets to improve care quality. In the patient specific strategy, individual patient EOLD-item scores are discussed and improvement actions formulated in multi-disciplinary team meetings.