Goals of Care: A Nursing Home Trial of Decision Support for Advanced Dementia

Study Overview
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Brief Summary
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This cluster randomized controlled trial is to examine whether decision support for goals of care can improve quality of communication and decision-making and improve the quality of palliative care for nursing home residents with advanced dementia.

Official Title
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Goals of Care: A Nursing Home Trial of Decision Support for Advanced Dementia

Conditions
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Dementia

Intervention / Treatment
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* Behavioral: Goals of care decision support


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Surrogate for nursing home resident with advanced dementia, paired with resident with advanced dementia Exclusion Criteria: Non-related legal surrogate without personal knowledge of resident

Ages Eligible for Study
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Minimum Age: 65 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Supportive Care
Allocation: Randomized
Intervention Model: Parallel Assignment
Masking: Triple


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: Decision support intervention<br>Decision aid and care plan meeting | Behavioral: Goals of care decision support<br>* Decision aid and care plan meeting<br>|
| No Intervention: Control<br>Attention control information on dementia care | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Quality of Communication and Decision-making | The Quality of Communication (QOC) score with its End of Life (EOL) subscale score. Scores range 0-10 on QOC and its subscales, with higher scores indicating better communication quality. | 3 months | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Number of Palliative Care Domains in Care Plan | Index score ranging from 0-10 with one point given for care plan addressing each domain: prognosis, goals of care, physical symptoms, emotional needs, spiritual needs, resuscitation, artificial feeding, intravenous fluids, antibiotics, hospitalization. Higher scores indicate better palliative care. | 9 months | 
| Satisfaction With Care | Satisfaction with Care at the End of Life in Dementia (SWC-EOLD) scale; 10 items rated 1-4 and summed with total potential range 10-40. Higher scores indicate better satisfaction. | 9 months | 
| Comfort in Dying | Comfort Assessment in Dying for Dementia (CAD-EOLD) includes 14 items rated on a 3 point scale, summed for a total potential score of 14-42. Higher scores indicate better comfort. | 9 months | 
| Alzheimer Disease Related Quality of Life | The Alzheimer Disease Related Quality of Life scale (ADRQL) ranges from 0-100 with higher scores indicating better quality of life. | 9 months | 
| Quality of Dying | Quality of Dying in Long-term Care (QOD-LTC) instrument has 11 items in 3 subscales measuring personhood, closure and preparation for dying, for total scores ranging 5-55. Higher scores indicate better quality of the dying experience. | 9 months | 
| Frequency of Communication | Number of participants who report discussions of goals of care with providers -- physicians, nurse practitioners, physician assistants or nursing home staff -- counted during follow-up | 9 months | 
| Hospice Referral | Number of participants with a referral to hospice services | 9 months | 
| Hospitalizations | Number and timing of transfer to hospital from nursing home care, measured as hospital transfers per 90 person-days of follow-up, with follow-up censored at death. | 9 months | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Dementia, decision making