| Primary | Incidence of Hospital Transfers (Patients) | Number of hospital transfers (number of emergency room visits + number of hospital admissions )/(person-days of follow-up) within 60 days after discharge from the index hospitalization. | | Posted | | Number | | events per person day at risk | | 60 days post index hospital discharge | | | | ID | Title | Description |
|---|
| OG000 | Intervention Condition: ADRD-PC Program | Patient-family caregiver dyads randomized to the intervention arm received ADRD-PC Program during hospitalization and post-acute care.
- Dementia-specific palliative care delivered by hospital-based specialty interdisciplinary palliative care teams.
- Standardized caregiver education will be provided by the palliative care team. Clinicians will share and discuss the booklet Advanced Dementia: A Guide for Families, which addresses common concerns and treatment decisions.
- Transitional care will be provided by the palliative care team, including facilitation of community-based services and two post-discharge telephone calls.
| | OG001 | Control Condition | Patient-family caregiver dyads randomized to the control arm received educational materials from the Alzheimer's Association, specifically designed for late-stage ADRD caregivers. The patients will receive usual hospital and post-acute care. |
| | | Title | Denominators | Categories |
|---|
| | |
| | Group IDs | Group Description | Statistical Method | Statistical Comment | P-Value | P-Value Comment | Parameter Type | Parameter Value | Dispersion Type | Dispersion Value | Confidence Interval Sides | Confidence Interval % | CI Lower Limit | CI Upper Limit | CI Lower Limit Comment | CI Upper Limit Comment | Estimate Comment | Tested Non-Inferiority | Non-Inferiority Type | Non-Inferiority Comment | Other Analysis Description |
|---|
| | Poisson regression | | 0.522 | | | | | | | | | | | | | | Superiority | | |
|
| Secondary | Symptom Treatment (Patients) | Palliative Care Domain Index items - 10 items scored present vs absent, scored ranging 0-10 with higher scores indicating increased symptom treatment | | Posted | | Mean | Standard Deviation | score on a scale | | 60 days post hospital discharge | | | | ID | Title | Description |
|---|
| OG000 | Intervention Condition: ADRD-PC Program | Patient-family caregiver dyads randomized to the intervention arm received ADRD-PC Program during hospitalization and post-acute care.
- Dementia-specific palliative care delivered by hospital-based specialty interdisciplinary palliative care teams.
- Standardized caregiver education will be provided by the palliative care team. Clinicians will share and discuss the booklet Advanced Dementia: A Guide for Families, which addresses common concerns and treatment decisions.
- Transitional care will be provided by the palliative care team, including facilitation of community-based services and two post-discharge telephone calls.
| | OG001 | Control Condition | Patient-family caregiver dyads randomized to the control arm received educational materials from the Alzheimer's Association, specifically designed for late-stage ADRD caregivers. The patients will receive usual hospital and post-acute care. |
| |
| Secondary | Symptom Control for Physical Symptoms (Patients) | Symptom Management at the End of Life in Dementia (SM-EOLD) - Likert scale, 9 items each scored 0-5, range of 0-45 with higher scores indicating greater symptoms. | Caregivers who skipped questions or did not complete the post hospital discharge follow-up interview are not included. | Posted | | Mean | Standard Deviation | score on a scale | | 60 days post hospital discharge | | | | ID | Title | Description |
|---|
| OG000 | Intervention Condition: ADRD-PC Program | Patient-family caregiver dyads randomized to the intervention arm received ADRD-PC Program during hospitalization and post-acute care.
- Dementia-specific palliative care delivered by hospital-based specialty interdisciplinary palliative care teams.
- Standardized caregiver education will be provided by the palliative care team. Clinicians will share and discuss the booklet Advanced Dementia: A Guide for Families, which addresses common concerns and treatment decisions.
- Transitional care will be provided by the palliative care team, including facilitation of community-based services and two post-discharge telephone calls.
| | OG001 | Control Condition | Patient-family caregiver dyads randomized to the control arm received educational materials from the Alzheimer's Association, specifically designed for late-stage ADRD caregivers. The patients will receive usual hospital and post-acute care. |
| |
| Secondary | Symptom Control for Neuropsychiatric Symptoms-Severity (Patients) | Neuropsychiatric Inventory Questionnaire (NPI-Q) Severity Score - 12 items, each symptom reported as present is rated from 1 (mild) to 3 (severe). The range in this subscale is 0-36 with higher scores indicating worse symptom control. | Caregivers who skipped questions or did not complete the post hospital discharge follow-up interview are not included. | Posted | | Mean | Standard Deviation | score on a scale | | 60 days post hospital discharge | | | | ID | Title | Description |
|---|
| OG000 | Intervention Condition: ADRD-PC Program | Patient-family caregiver dyads randomized to the intervention arm received ADRD-PC Program during hospitalization and post-acute care.
- Dementia-specific palliative care delivered by hospital-based specialty interdisciplinary palliative care teams.
- Standardized caregiver education will be provided by the palliative care team. Clinicians will share and discuss the booklet Advanced Dementia: A Guide for Families, which addresses common concerns and treatment decisions.
- Transitional care will be provided by the palliative care team, including facilitation of community-based services and two post-discharge telephone calls.
| | OG001 | Control Condition | Patient-family caregiver dyads randomized to the control arm received educational materials from the Alzheimer's Association, specifically designed for late-stage ADRD caregivers. The patients will receive usual hospital and post-acute care. |
|
| Secondary | Symptom Control for Neuropsychiatric Symptoms-Distress (Patients) | Neuropsychiatric Inventory Questionnaire (NPI-Q) Distress - 12 items, if the symptom was reported as present the caregiver rated the level of distress they experienced related tot he patient's symptom from 0 (not distressing) to 5 (extremely distressing). This subscale ranges from 0-60, with higher scores indicating more caregiver distress. | Caregivers who skipped questions or did not complete the post hospital discharge follow-up interview are not included. | Posted | | Mean | Standard Deviation | score on a scale | | 60 days post hospital discharge | | | | ID | Title | Description |
|---|
| OG000 | Intervention Condition: ADRD-PC Program | Patient-family caregiver dyads randomized to the intervention arm received ADRD-PC Program during hospitalization and post-acute care.
- Dementia-specific palliative care delivered by hospital-based specialty interdisciplinary palliative care teams.
- Standardized caregiver education will be provided by the palliative care team. Clinicians will share and discuss the booklet Advanced Dementia: A Guide for Families, which addresses common concerns and treatment decisions.
- Transitional care will be provided by the palliative care team, including facilitation of community-based services and two post-discharge telephone calls.
| | OG001 | Control Condition | Patient-family caregiver dyads randomized to the control arm received educational materials from the Alzheimer's Association, specifically designed for late-stage ADRD caregivers. The patients will receive usual hospital and post-acute care. |
|
| Secondary | Access to Hospice (Patients) | Percent of people with ADRD who access hospice services. | | Posted | | Number | | percentage of participants | | 60 days post hospital discharge | | | | ID | Title | Description |
|---|
| OG000 | Intervention Condition: ADRD-PC Program | Patient-family caregiver dyads randomized to the intervention arm received ADRD-PC Program during hospitalization and post-acute care.
- Dementia-specific palliative care delivered by hospital-based specialty interdisciplinary palliative care teams.
- Standardized caregiver education will be provided by the palliative care team. Clinicians will share and discuss the booklet Advanced Dementia: A Guide for Families, which addresses common concerns and treatment decisions.
- Transitional care will be provided by the palliative care team, including facilitation of community-based services and two post-discharge telephone calls.
| | OG001 | Control Condition | Patient-family caregiver dyads randomized to the control arm received educational materials from the Alzheimer's Association, specifically designed for late-stage ADRD caregivers. The patients will receive usual hospital and post-acute care. |
| |
| Secondary | Access to Community-based Palliative Care (Patients) | Percent of people with ADRD who access community-based palliative care services | | Posted | | Number | | percentage of participants | | 60 days post hospital discharge | | | | ID | Title | Description |
|---|
| OG000 | Intervention Condition: ADRD-PC Program | Patient-family caregiver dyads randomized to the intervention arm received ADRD-PC Program during hospitalization and post-acute care.
- Dementia-specific palliative care delivered by hospital-based specialty interdisciplinary palliative care teams.
- Standardized caregiver education will be provided by the palliative care team. Clinicians will share and discuss the booklet Advanced Dementia: A Guide for Families, which addresses common concerns and treatment decisions.
- Transitional care will be provided by the palliative care team, including facilitation of community-based services and two post-discharge telephone calls.
| | OG001 | Control Condition | Patient-family caregiver dyads randomized to the control arm received educational materials from the Alzheimer's Association, specifically designed for late-stage ADRD caregivers. The patients will receive usual hospital and post-acute care. |
| |
| Secondary | Transition to Nursing Home Level of Care (Patients) | Percent of people with ADRD who transition to nursing home care | | Posted | | Number | | percentage of participants | | 60 days post hospital discharge | | | | ID | Title | Description |
|---|
| OG000 | Intervention Condition: ADRD-PC Program | Patient-family caregiver dyads randomized to the intervention arm received ADRD-PC Program during hospitalization and post-acute care.
- Dementia-specific palliative care delivered by hospital-based specialty interdisciplinary palliative care teams.
- Standardized caregiver education will be provided by the palliative care team. Clinicians will share and discuss the booklet Advanced Dementia: A Guide for Families, which addresses common concerns and treatment decisions.
- Transitional care will be provided by the palliative care team, including facilitation of community-based services and two post-discharge telephone calls.
| | OG001 | Control Condition | Patient-family caregiver dyads randomized to the control arm received educational materials from the Alzheimer's Association, specifically designed for late-stage ADRD caregivers. The patients will receive usual hospital and post-acute care. |
| |
| Secondary | Documented Discussion of Dementia Prognosis (Patients) | Percent of patients with documented discussion of dementia prognosis in their medical record. | | Posted | | Number | | percentage of participants | | 60 days post hospital discharge | | | | ID | Title | Description |
|---|
| OG000 | Intervention Condition: ADRD-PC Program | Patient-family caregiver dyads randomized to the intervention arm received ADRD-PC Program during hospitalization and post-acute care.
- Dementia-specific palliative care delivered by hospital-based specialty interdisciplinary palliative care teams.
- Standardized caregiver education will be provided by the palliative care team. Clinicians will share and discuss the booklet Advanced Dementia: A Guide for Families, which addresses common concerns and treatment decisions.
- Transitional care will be provided by the palliative care team, including facilitation of community-based services and two post-discharge telephone calls.
| | OG001 | Control Condition | Patient-family caregiver dyads randomized to the control arm received educational materials from the Alzheimer's Association, specifically designed for late-stage ADRD caregivers. The patients will receive usual hospital and post-acute care. |
| |
| Secondary | Documented Discussion of Goals of Care (Patients) | Percent of patients with documented discussion of overall goals of care. | | Posted | | Number | | percentage of participants | | 60 days post hospital discharge | | | | ID | Title | Description |
|---|
| OG000 | Intervention Condition: ADRD-PC Program | Patient-family caregiver dyads randomized to the intervention arm received ADRD-PC Program during hospitalization and post-acute care.
- Dementia-specific palliative care delivered by hospital-based specialty interdisciplinary palliative care teams.
- Standardized caregiver education will be provided by the palliative care team. Clinicians will share and discuss the booklet Advanced Dementia: A Guide for Families, which addresses common concerns and treatment decisions.
- Transitional care will be provided by the palliative care team, including facilitation of community-based services and two post-discharge telephone calls.
| | OG001 | Control Condition | Patient-family caregiver dyads randomized to the control arm received educational materials from the Alzheimer's Association, specifically designed for late-stage ADRD caregivers. The patients will receive usual hospital and post-acute care. |
| |
| Secondary | Shared Decision-making - Hospitalization (Patients) | Percent of patients whose caregivers reported shared decision-making discussions with a healthcare provider about future hospitalization for the patient. | | Posted | | Number | | percentage of participants | | 60 days post hospital discharge | | | | ID | Title | Description |
|---|
| OG000 | Intervention Condition: ADRD-PC Program | Patient-family caregiver dyads randomized to the intervention arm received ADRD-PC Program during hospitalization and post-acute care.
- Dementia-specific palliative care delivered by hospital-based specialty interdisciplinary palliative care teams.
- Standardized caregiver education will be provided by the palliative care team. Clinicians will share and discuss the booklet Advanced Dementia: A Guide for Families, which addresses common concerns and treatment decisions.
- Transitional care will be provided by the palliative care team, including facilitation of community-based services and two post-discharge telephone calls.
| | OG001 | Control Condition | Patient-family caregiver dyads randomized to the control arm received educational materials from the Alzheimer's Association, specifically designed for late-stage ADRD caregivers. The patients will receive usual hospital and post-acute care. |
| |
| Secondary | Shared Decision-making - Burdensome Treatment (Patients) | Percent of patients whose caregivers reported shared decision-making about resuscitation, ventilator use, tube feeding, antibiotics for infection treatment. | | Posted | | Number | | percentage of participants | | 60 days post hospital discharge | | | | ID | Title | Description |
|---|
| OG000 | Intervention Condition: ADRD-PC Program | Patient-family caregiver dyads randomized to the intervention arm received ADRD-PC Program during hospitalization and post-acute care.
- Dementia-specific palliative care delivered by hospital-based specialty interdisciplinary palliative care teams.
- Standardized caregiver education will be provided by the palliative care team. Clinicians will share and discuss the booklet Advanced Dementia: A Guide for Families, which addresses common concerns and treatment decisions.
- Transitional care will be provided by the palliative care team, including facilitation of community-based services and two post-discharge telephone calls.
| | OG001 | Control Condition | Patient-family caregiver dyads randomized to the control arm received educational materials from the Alzheimer's Association, specifically designed for late-stage ADRD caregivers. The patients will receive usual hospital and post-acute care. |
| |
| Secondary | Caregiver Distress Score (Caregivers) | Family Distress in Advanced Dementia scale - 21 item Likert scale (1=Never to 5=Always) ranges from 21 to 105 with higher scores indicating more distress. | Caregivers who skipped questions or did not complete the post hospital discharge follow-up interview are not included. | Posted | | Mean | Standard Deviation | score on a scale | | 60 days post hospital discharge | | | | ID | Title | Description |
|---|
| OG000 | Intervention Condition: ADRD-PC Program | Patient-family caregiver dyads randomized to the intervention arm received ADRD-PC Program during hospitalization and post-acute care.
- Dementia-specific palliative care delivered by hospital-based specialty interdisciplinary palliative care teams.
- Standardized caregiver education will be provided by the palliative care team. Clinicians will share and discuss the booklet Advanced Dementia: A Guide for Families, which addresses common concerns and treatment decisions.
- Transitional care will be provided by the palliative care team, including facilitation of community-based services and two post-discharge telephone calls.
| | OG001 | Control Condition | Patient-family caregiver dyads randomized to the control arm received educational materials from the Alzheimer's Association, specifically designed for late-stage ADRD caregivers. The patients will receive usual hospital and post-acute care. |
| |
| Secondary | Caregiver Burden (Caregiver) | Zarit Burden scale, short form - 6 items, Likert (1=never to 5=Nearly Always), range 0-24 with higher scores indicating more caregiver burden. | Caregivers who skipped questions or did not complete the post hospital discharge follow-up interview are not included. | Posted | | Mean | Standard Deviation | score on a scale | | 60 days post hospital discharge | | | | ID | Title | Description |
|---|
| OG000 | Intervention Condition: ADRD-PC Program | Patient-family caregiver dyads randomized to the intervention arm received ADRD-PC Program during hospitalization and post-acute care.
- Dementia-specific palliative care delivered by hospital-based specialty interdisciplinary palliative care teams.
- Standardized caregiver education will be provided by the palliative care team. Clinicians will share and discuss the booklet Advanced Dementia: A Guide for Families, which addresses common concerns and treatment decisions.
- Transitional care will be provided by the palliative care team, including facilitation of community-based services and two post-discharge telephone calls.
| | OG001 | Control Condition | Patient-family caregiver dyads randomized to the control arm received educational materials from the Alzheimer's Association, specifically designed for late-stage ADRD caregivers. The patients will receive usual hospital and post-acute care. |
| |