APPROACHES: Aligning Patient Preferences: a Role Offering Alzheimer's Patients, Caregivers, and Healthcare Providers Education and Support
Study Details
Study Description
Brief Summary
Nursing home (NH) patients with Alzheimer's disease and related dementias often receive unwanted, burdensome treatments such as hospitalization. Advance care planning (ACP) is a key strategy to support patients and family-caregivers in making informed decisions and ensuring treatment preferences are proactively known and honored. The ACP Specialist Program will improve care and reduce unwanted, burdensome hospitalizations through improved ACP procedures, standardized staff education on ACP, and systematic ACP facilitation delivered by existing NH staff.
| Condition or Disease | Intervention/Treatment | Phase |
|---|---|---|
|
N/A |
Detailed Description
A significant number of patients Alzheimer's disease or related dementia diagnoses will be cared for in nursing homes near the end of life. Unfortunately, many of these patients experience unwanted and burdensome medical treatments, such as potentially avoidable hospitalizations, that negatively impact quality of life. Advance care planning (ACP) discussions with patients and family caregivers are important to explore goals in advance of a crisis and support informed, values-based decision-making. The ACP process helps ensure that preferences about treatments such as hospitalization are known, documented, and honored. Research indicates that ACP can reduce burdensome treatments and increase the likelihood that care will match documented preferences. Nursing homes are currently required by regulations to offer ACP to patients and families. However, there are no training requirements for nursing home staff and approaches to fulfilling this regulatory and ethical responsibility vary widely, resulting in inconsistent ACP. The "Aligning Patient Preferences - a Role Offering Alzheimer's patients, Caregivers, and Healthcare providers Education and Support (APPROACHES)" trial will test the ACP Specialist Program. Existing nursing home staff members will be trained to enhance care and reduce unwanted, burdensome hospitalizations through improved ACP procedures, standardized staff education on ACP, and systematic ACP facilitation. The primary trial outcome is hospital transfers (admissions and emergency department visits) per 1000 person-days alive. Consistent with the spirit of a pragmatic trial, study outcomes rely on data already collected for quality improvement, clinical or billing purposes. In the 18 month R21 pilot phase, the aims are to: 1) Establish the trial's organizational structure and processes; and 2) Pilot test the intervention in 4 nursing homes. In the R33 phase, a pragmatic cluster randomized clinical trial will be conducted in partnership with 3 nursing home corporations who operate a combined total of 206 diverse urban and rural facilities in 14 states. The aims of the 42 month R33 phase are to: 3) Evaluate the primary outcome of hospital transfers over 12 months among patients with dementia in intervention versus control nursing homes; and 4) Compare ACP documentation, measures of quality of care at the end of life, and patient and family satisfaction between the intervention versus control nursing homes. If successful, the ACP Specialist Program will be primed for rapid translation into nursing home practice to reduce unwanted, burdensome hospitalizations and improve quality of care for patients with dementia.
Study Design
Arms and Interventions
| Arm | Intervention/Treatment |
|---|---|
| Experimental: ACP Specialist Program The ACP Specialist will work with nursing home leaders to: i. Consolidate nursing home ACP procedures; ii. Train and educate staff; and iii. Facilitate ACP with patients who have Alzheimer's Disease/related dementias and their family caregivers. |
Behavioral: ACP Specialist Program
New structured role with responsibility for ACP
|
| No Intervention: Usual Care Facility will followed usual ACP procedures. |
Outcome Measures
Primary Outcome Measures
- Hospital Transfers [12 months]
Hospital transfers (admissions and emergency department visits)/1000 person-days alive between Alzheimer's Disease and Related Dementias (ADRD) patients in intervention vs. control NHs
Secondary Outcome Measures
- ACP preferences documentation [12 months]
% ADRD patients with do not resuscitate, do not hospitalize, no tube-feeding, or do not intubate orders, and Physician Orders for Life-Sustaining Treatment forms
- hospice enrollment [12 months]
% ADRD patients who use hospice
- death in hospital [12 months]
% ADRD patients who die in the hospital
- family satisfaction [12 months]
family satisfaction with care
Eligibility Criteria
Criteria
Inclusion Criteria:
-
Facilities are owned by NH corporate partners
-
Facilities are Medicare/Medicaid-certified
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Facilities have an electronic medical records system
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Minimum bedsize of 50 or more;
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At least 50% long-stay as defined by a length of stay of 100 days or longer.
Exclusion Criteria:
- Problematic or unstable facilities will be removed in consultation with NH corporate leaders prior to randomization
Contacts and Locations
Locations
| Site | City | State | Country | Postal Code | |
|---|---|---|---|---|---|
| 1 | Miller's Merry Manor | Warsaw | Indiana | United States | 46580 |
| 2 | Signature HealthCARE LLC | Louisville | Kentucky | United States | 40299 |
| 3 | Genesis HealthCare | Kennett Square | Pennsylvania | United States | 19348 |
Sponsors and Collaborators
- Indiana University
- National Institute on Aging (NIA)
- Hebrew SeniorLife
- Regenstrief Institute, Inc.
Investigators
None specified.Study Documents (Full-Text)
None provided.More Information
Publications
None provided.- 00481769
- R21AG057463-01