Email updates

Keep up to date with the latest news and content from BMC Palliative Care and BioMed Central.

Open Access Study protocol

Feedback on end-of-life care in dementia: the study protocol of the FOLlow-up project

Jannie A Boogaard12*, Mirjam C van Soest-Poortvliet1, Johannes R Anema3, Wilco P Achterberg4, Cees M P M Hertogh1, Henrica C W de Vet5 and Jenny T van der Steen1*

Author Affiliations

1 Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Van der Boechorststraat 7, 1081BT, Amsterdam, The Netherlands

2 Gerion, VU University Medical Center, Amsterdam, The Netherlands

3 Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands

4 Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands

5 Department of Epidemiology and Biostatistics, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands

For all author emails, please log on.

BMC Palliative Care 2013, 12:29  doi:10.1186/1472-684X-12-29

Published: 7 August 2013

Abstract

Background

End-of-life care in dementia in nursing homes is often found to be suboptimal. The Feedback on End-of-Life care in dementia (FOLlow-up) project tests the effectiveness of audit- and feedback to improve the quality of end-of-life care in dementia.

Methods/Design

Nursing homes systematically invite the family after death of a resident with dementia to provide feedback using the End-of-Life in Dementia (EOLD) – instruments. Two audit- and feedback strategies are designed and tested in a three-armed Randomized Controlled Trial (RCT): a generic feedback strategy using cumulative EOLD-scores of a group of patients and a patient specific feedback strategy using EOLD-scores on a patient level. A total of 18 nursing homes, three groups of six homes matched on size, geographic location, religious affiliation and availability of a palliative care unit were randomly assigned to an intervention group or the control group. The effect on quality of care and quality of dying and the barriers and facilitators of audit- and feedback in the nursing home setting are evaluated using mixed-method analyses.

Discussion

The FOLlow-up project is the first study to assess and compare the effect of two audit- and feedback strategies to improve quality of care and quality of dying in dementia. The results contribute to the development of practice guidelines for nursing homes to monitor and improve care outcomes in the realm of end-of-life care in dementia.

Trial registration

The Netherlands National Trial Register (NTR). Trial number: NTR3942

Keywords:
End-of-life care; Satisfaction with care; Quality of care; Dementia; Nursing home; Quality indicators