Using Palliative Leaders in Facilities to Transform Care for People with Alzheimer’s Disease (UPLIFT-AD): protocol of a palliative care clinical trial in nursing homes
Abstract Background Palliative care is an effective model of care focused on maximizing quality of life and relieving the suffering of people with serious illnesses, including dementia. Evidence shows that many people receiving care in nursing homes are eligible for and would benefit from palliative...
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| Format: | Article |
| Language: | English |
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BMC
2023-07-01
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| Series: | BMC Palliative Care |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12904-023-01226-0 |
| _version_ | 1797769333785493504 |
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| author | Kathleen T. Unroe Mary Ersek Wanzhu Tu Alexander Floyd Todd Becker Jessica Trimmer Jodi Lamie John Cagle |
| author_facet | Kathleen T. Unroe Mary Ersek Wanzhu Tu Alexander Floyd Todd Becker Jessica Trimmer Jodi Lamie John Cagle |
| author_sort | Kathleen T. Unroe |
| collection | DOAJ |
| description | Abstract Background Palliative care is an effective model of care focused on maximizing quality of life and relieving the suffering of people with serious illnesses, including dementia. Evidence shows that many people receiving care in nursing homes are eligible for and would benefit from palliative care services. Yet, palliative care is not consistently available in nursing home settings. There is a need to test pragmatic strategies to implement palliative care programs in nursing homes. Methods/design The UPLIFT-AD (Utilizing Palliative Leaders in Facilities to Transform care for people with Alzheimer’s Disease) study is a pragmatic stepped wedge trial in 16 nursing homes in Maryland and Indiana, testing the effectiveness of the intervention while assessing its implementation. The proposed intervention is a palliative care program, including 1) training at least two facility staff as Palliative Care Leads, 2) training for all staff in general principles of palliative care, 3) structured screening for palliative care needs, and 4) on-site specialty palliative care consultations for a one-year intervention period. All residents with at least moderate cognitive impairment, present in the facility for at least 30 days, and not on hospice at baseline are considered eligible. Opt-out consent is obtained from legal decision-makers. Outcome assessments measuring symptoms and quality of care are obtained from staff and family proxy respondents at four time points: pre-implementation (baseline), six months after implementation, at 12 months (conclusion of implementation), and six months after the end of implementation. Palliative care attitudes and practices are assessed through surveys of frontline nursing home staff both pre- and post-implementation. Qualitative and quantitative implementation data, including fidelity assessments and interviews with Palliative Care Leads, are also collected. The study will follow the Declaration of Helsinki. Discussion This trial assesses the implementation and effectiveness of a robust palliative care intervention for residents with moderate-to-advanced cognitive impairment in 16 diverse nursing homes. The intervention represents an innovative, pragmatic approach that includes both internal capacity-building of frontline nursing home staff, and support from external palliative care specialty consultants. Trial registration The project is registered on ClinicalTrials.gov: NCT04520698. |
| first_indexed | 2024-03-12T21:06:25Z |
| format | Article |
| id | doaj.art-de63f9587cd7490f8bd59542674028ab |
| institution | Directory Open Access Journal |
| issn | 1472-684X |
| language | English |
| last_indexed | 2024-03-12T21:06:25Z |
| publishDate | 2023-07-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Palliative Care |
| spelling | doaj.art-de63f9587cd7490f8bd59542674028ab2023-07-30T11:27:04ZengBMCBMC Palliative Care1472-684X2023-07-0122111010.1186/s12904-023-01226-0Using Palliative Leaders in Facilities to Transform Care for People with Alzheimer’s Disease (UPLIFT-AD): protocol of a palliative care clinical trial in nursing homesKathleen T. Unroe0Mary Ersek1Wanzhu Tu2Alexander Floyd3Todd Becker4Jessica Trimmer5Jodi Lamie6John Cagle7Indiana University School of MedicineUniversity of Pennsylvania School of NursingIndiana University School of MedicineRegenstrief Institute, IncUniversity of Maryland School of Social WorkUniversity of Maryland School of Social WorkRegenstrief Institute, IncUniversity of Maryland School of Social WorkAbstract Background Palliative care is an effective model of care focused on maximizing quality of life and relieving the suffering of people with serious illnesses, including dementia. Evidence shows that many people receiving care in nursing homes are eligible for and would benefit from palliative care services. Yet, palliative care is not consistently available in nursing home settings. There is a need to test pragmatic strategies to implement palliative care programs in nursing homes. Methods/design The UPLIFT-AD (Utilizing Palliative Leaders in Facilities to Transform care for people with Alzheimer’s Disease) study is a pragmatic stepped wedge trial in 16 nursing homes in Maryland and Indiana, testing the effectiveness of the intervention while assessing its implementation. The proposed intervention is a palliative care program, including 1) training at least two facility staff as Palliative Care Leads, 2) training for all staff in general principles of palliative care, 3) structured screening for palliative care needs, and 4) on-site specialty palliative care consultations for a one-year intervention period. All residents with at least moderate cognitive impairment, present in the facility for at least 30 days, and not on hospice at baseline are considered eligible. Opt-out consent is obtained from legal decision-makers. Outcome assessments measuring symptoms and quality of care are obtained from staff and family proxy respondents at four time points: pre-implementation (baseline), six months after implementation, at 12 months (conclusion of implementation), and six months after the end of implementation. Palliative care attitudes and practices are assessed through surveys of frontline nursing home staff both pre- and post-implementation. Qualitative and quantitative implementation data, including fidelity assessments and interviews with Palliative Care Leads, are also collected. The study will follow the Declaration of Helsinki. Discussion This trial assesses the implementation and effectiveness of a robust palliative care intervention for residents with moderate-to-advanced cognitive impairment in 16 diverse nursing homes. The intervention represents an innovative, pragmatic approach that includes both internal capacity-building of frontline nursing home staff, and support from external palliative care specialty consultants. Trial registration The project is registered on ClinicalTrials.gov: NCT04520698.https://doi.org/10.1186/s12904-023-01226-0Nursing homePalliative careDementia |
| spellingShingle | Kathleen T. Unroe Mary Ersek Wanzhu Tu Alexander Floyd Todd Becker Jessica Trimmer Jodi Lamie John Cagle Using Palliative Leaders in Facilities to Transform Care for People with Alzheimer’s Disease (UPLIFT-AD): protocol of a palliative care clinical trial in nursing homes BMC Palliative Care Nursing home Palliative care Dementia |
| title | Using Palliative Leaders in Facilities to Transform Care for People with Alzheimer’s Disease (UPLIFT-AD): protocol of a palliative care clinical trial in nursing homes |
| title_full | Using Palliative Leaders in Facilities to Transform Care for People with Alzheimer’s Disease (UPLIFT-AD): protocol of a palliative care clinical trial in nursing homes |
| title_fullStr | Using Palliative Leaders in Facilities to Transform Care for People with Alzheimer’s Disease (UPLIFT-AD): protocol of a palliative care clinical trial in nursing homes |
| title_full_unstemmed | Using Palliative Leaders in Facilities to Transform Care for People with Alzheimer’s Disease (UPLIFT-AD): protocol of a palliative care clinical trial in nursing homes |
| title_short | Using Palliative Leaders in Facilities to Transform Care for People with Alzheimer’s Disease (UPLIFT-AD): protocol of a palliative care clinical trial in nursing homes |
| title_sort | using palliative leaders in facilities to transform care for people with alzheimer s disease uplift ad protocol of a palliative care clinical trial in nursing homes |
| topic | Nursing home Palliative care Dementia |
| url | https://doi.org/10.1186/s12904-023-01226-0 |
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