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

Boogaard, Jannie A.; Soest‐Poortvliet, Mirjam C. van; Anema, Johannes R.; Achterberg, Wilco P.; Hertogh, Cees M.P.M.; Vet, Henrica C.W. de; Steen, Jenny T. van der

doi:10.1186/1472-684x-12-29

Cited by 8 publications

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“…The study protocol details on design and methods and has been published elsewhere. 13 In brief, triplets of nursing homes were, based on previous research on factors potentially affecting nursing home resident outcome and family satisfaction with care as reported in the literature, 14 matched on number of psychogeriatric beds, presence of a palliative care unit, and urban/non-urban location. The triplets were randomly assigned to the three groups: (1) the group testing the generic feedback strategy, (2) the group testing the patient-specific feedback strategy, and (3) the control group.…”

Section: Methodsmentioning

confidence: 99%

“…We explicitly aimed to implement feedback strategies that were “sustainable with limited external support,” as reported in the protocol article. 13 The feedback strategies were implemented in Dutch nursing homes that participated in the intervention groups. Feedback was provided with bereaved family caregivers’ ratings on the End-of-Life in Dementia–Satisfaction With Care (EOLD-SWC) and the End-of-Life in Dementia–Comfort Assessment in Dying (EOLD-CAD) scales.…”

Section: Methodsmentioning

confidence: 99%

“… 15 We used these instruments as the (primary) outcomes because they were identified as the best instruments to evaluate the quality of end-of-life care and the quality of dying (comfort) in patients with dementia in terms of validity, reliability, and ease of use. 13 , 16 – 18 These instruments allowed family caregivers to report their perception of the quality of care (EOLD-SWC) and the quality of dying (EOLD-CAD). The family reports were fed back to use it to improve the quality of end-of-life care and the quality of dying in nursing home residents with dementia.…”

Section: Methodsmentioning

confidence: 99%

“…At the start of the intervention phase, they received the document with all improvement suggestions to inspire initiation of care improvement actions based on the feedback. 13 …”

Section: Methodsmentioning

confidence: 99%

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Effects of two feedback interventions on end-of-life outcomes in nursing home residents with dementia: A cluster-randomized controlled three-armed trial

et al. 2018

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Background:Despite increased attention for palliative care in dementia, recent studies found burdensome symptoms and unmet family caregiver needs in the last phase of life. Feedback is being used to improve the quality of palliative care, but we do not know how effective it is.Aim:To assess the effect of two feedback strategies on perceived quality of end-of-life care and comfort in dying nursing home residents with dementia.Methods:In a cluster-randomized controlled trial, the End-of-Life in Dementia–Satisfaction With Care and the End-of-Life in Dementia–Comfort Assessment in Dying scales were completed by bereaved family caregivers of residents with dementia of 18 Dutch nursing homes. Two feedback strategies, generic feedback with mean End-of-Life in Dementia-scores and feedback with individual (patient-specific) End-of-Life in Dementia-scores, were compared to no feedback provided. The intervention groups discussed End-of-Life in Dementia-ratings in team meetings and formulated actions to improve care. Multi-level analyses assessed effects.Results:A total of 668 families rated the End-of-Life in Dementia–instruments. Compared to no feedback, the generic strategy resulted in lower quality of end-of-life care in unadjusted (B = −1.65, confidence interval = −3.27; −0.21) and adjusted analyses (B = −2.41, confidence interval = −4.07; −0.76), while there was no effect on comfort. The patient-specific strategy did not affect the quality of end-of-life care, but it increased comfort in unadjusted analyses (only, B = 2.20, confidence interval = 0.15; 4.39; adjusted: B = 1.88, confidence interval = −0.34; 4.10).Conclusion:Neither feedback strategy improved end-of-life outcome. Perhaps, skills to translate the feedback into care improvement actions were insufficient. Feedback with favorable family ratings might even have triggered opposite effects. Trial number: NTR3942.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

“…At the start of the intervention phase, they received the document with all improvement suggestions to inspire initiation of care improvement actions based on the feedback. 13 …”

Section: Methodsmentioning

confidence: 99%

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Effects of two feedback interventions on end-of-life outcomes in nursing home residents with dementia: A cluster-randomized controlled three-armed trial

et al. 2018

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“…A difference of 3 points is clinically meaningful. 30 This implies, for example, that 3 of 10 or 14 SD: standard deviation. a "How sick is the patient now?…”

Section: Analysesmentioning

confidence: 98%

Comfort goal of care and end-of-life outcomes in dementia: A prospective study

et al. 2015

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Evaluation of a Palliative Care Program for Nursing Homes in 7 Countries

et al. 2020

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for the PACE trial group IMPORTANCE High-quality evidence on how to improve palliative care in nursing homes is lacking.OBJECTIVE To investigate the effect of the Palliative Care for Older People (PACE) Steps to Success Program on resident and staff outcomes. DESIGN, SETTING, AND PARTICIPANTSA cluster-randomized clinical trial (2015)(2016)(2017) in 78 nursing homes in 7 countries comparing PACE Steps to Success Program (intervention) with usual care (control). Randomization was stratified by country and median number of beds in each country in a 1:1 ratio. INTERVENTIONSThe PACE Steps to Success Program is a multicomponent intervention to integrate basic nonspecialist palliative care in nursing homes. Using a train-the-trainer approach, an external trainer supports staff in nursing homes to introduce a palliative care approach over the course of 1 year following a 6-steps program. The steps are (1) advance care planning with residents and family, (2) assessment, care planning, and review of needs and problems, (3) coordination of care via monthly multidisciplinary review meetings, (4) delivery of high-quality care focusing on pain and depression, (5) care in the last days of life, and (6) care after death. MAIN OUTCOMES AND MEASURESThe primary resident outcome was comfort in the last week of life measured after death by staff using the End-of-Life in Dementia Scale Comfort Assessment While Dying (EOLD-CAD; range, 14-42). The primary staff outcome was knowledge of palliative care reported by staff using the Palliative Care Survey (PCS; range, 0-1).RESULTS Concerning deceased residents, we collected 551 of 610 questionnaires from staff at baseline and 984 of 1178 postintervention in 37 intervention and 36 control homes. Mean (SD) age at time of death ranged between 85.22 (9.13) and 85.91 (8.57) years, and between 60.6% (160/264) and 70.6% (190/269) of residents were women across the different groups. Residents' comfort in the last week of life did not differ between intervention and control groups (baseline-adjusted mean difference, −0.55; 95% CI, −1.71 to 0.61; P = .35). Concerning staff, we collected 2680 of 3638 questionnaires at baseline and 2437 of 3510 postintervention in 37 intervention and 38 control homes. Mean (SD) age of staff ranged between 42.3 (12.1) and 44.1 (11.7) years, and between 87.2% (1092/1253) and 89% (1224/1375) of staff were women across the different groups. Staff in the intervention group had statistically significantly better knowledge of palliative care than staff in the control group, but the clinical difference was minimal (baseline-adjusted mean difference, 0.04; 95% CI, 0.02-0.05; P < .001). Data analyses began on April 20, 2018. CONCLUSIONS AND RELEVANCEResidents' comfort in the last week of life did not improve after introducing the PACE Steps to Success Program. Improvements in staff knowledge of palliative care were clinically not important.

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

Cited by 8 publications

References 34 publications

Effects of two feedback interventions on end-of-life outcomes in nursing home residents with dementia: A cluster-randomized controlled three-armed trial

Effects of two feedback interventions on end-of-life outcomes in nursing home residents with dementia: A cluster-randomized controlled three-armed trial

Comfort goal of care and end-of-life outcomes in dementia: A prospective study

Evaluation of a Palliative Care Program for Nursing Homes in 7 Countries

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