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| ID | Type | Description | Link |
|---|---|---|---|
| 5R01NR020491 | U.S. NIH Grant/Contract | View source |
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| Name | Class |
|---|---|
| University of Arkansas | OTHER |
| University of Washington | OTHER |
| University of Colorado, Denver | OTHER |
| Alaska Native Tribal Health Consortium |
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The older Alaska Native/American Indian (ANAI) population is increasing at twice the rate of the general population with a higher burden of serious illness. Older ANAI adults with serious illness are half as likely to have advance directives (AD), indicating a need for improved access to and utilization of advance care planning (ACP) to ensure that medical care aligns with the values, goals, and preferences of ANAI patients and their families throughout the illness trajectory. The major goals of this cluster randomized trial (CRT) are to (1) evaluate the comparative effectiveness of usual care and JUMPSTART- ANAI, a culturally tailored ACP communication intervention, for prompting patient-driven ACP conversations between ANAI adults and primary care providers and to (1) identify key factors to successfully implement the intervention in health systems serving ANAI adults with serious illness.
Despite a disproportionate burden of serious illness, Alaska Native and American Indian (ANAI) people are far less likely than their peers in the general US population to use palliative care, including advance care planning (ACP), which aims to align medical care with patients' values, goals, and preferences. ACP has been demonstrated to result in decreased depression, anxiety, and grief for patients and their families, increased symptom management, and fewer non-beneficial and unwanted end-of-life treatments. ACP is typically documented in advance directives (ADs) that specify patient preferences for life-sustaining treatments and who can make medical decisions on their behalf. Yet, ANAI people ages 55 and older are half as likely to have ADs as their White peers. A previous study culturally tailored and piloted an ACP communication intervention-JUMPSTART-ANAI-among 68 ANAI adults with serious illness in a Tribal health system in Alaska. This project builds on the previous study with a type 1 hybrid effectiveness-implementation trial of JUMPSTART-ANAI. The goal of this study is tailor an implementation plan for JUMPSTART-ANAI, evaluate the comparative effectiveness of the intervention and usual care for promoting patient-driven ACP communication, as measured by ADs documented in the electronic health record and identify key factors for successfully implementing JUMPSTART-ANAI in primary care systems serving ANAI adults with serious illness. Increasing access to culturally appropriate, evidence-based ACP is a high priority for Alaska Native health leaders and communities. By evaluating the effectiveness of a culturally tailored ACP intervention and tailoring implementation of the intervention for use in routine primary care, this study will generate critical information for implementing and improving palliative care services among a rapidly growing population of ANAI adults with serious illness.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Jumpstart 1 | Experimental | Questionnaire on advance care planning experiences, preferences, and concerns |
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| Jumpstart 2 | Active Comparator | Questionnaire on advance care planning experiences, preferences, and concerns plus feedback form (patient and provider) |
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| Usual care | No Intervention |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| JUMPSTART-ANAI | Behavioral | Patient questionnaire about experiences, preferences, and concerns regarding ACP followed by feedback form with "tips" for initiating ACP conversation with provider at next clinical visit. |
| Measure | Description | Time Frame |
|---|---|---|
| Number of participants with an advance directive in the electronic health record | New advance directive scanned into EHR | Baseline, 3 months, 6 months, 12 months |
| Measure | Description | Time Frame |
|---|---|---|
| Quality of communication | Patient-rated quality of patient-provider communication | Baseline, 3 months |
| Psychological distress | Symptoms of anxiety and depression |
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Inclusion Criteria:
Age 40 or older with a qualifying serious illness condition (e.g., COPD) OR Age 65 or older (regardless of diagnosis) AND Alaska Native and/or American Indian AND Empaneled to a primary care provider AND 2 or more to primary care in last 12 months AND No advance directives documented in electronic health record
Exclusion Criteria:
Unable to provide informed consent AND/OR Not able to complete 30-minute study visit by phone, video call, or in person
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Shannon Medlock, MS | Contact | (907)729-6322 | smedlock@scf.cc | |
| John Trainor, PhD, MPH | Contact | jtrainor@scf.cc |
| Name | Affiliation | Role |
|---|---|---|
| Jennifer Shaw, PhD | University of Alaska Fairbanks | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Southcentral Foundation | Recruiting | Anchorage | Alaska | 99508 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 31258037 | Background | Lillie KM, Dirks LG, Curtis JR, Candrian C, Kutner JS, Shaw JL. Culturally Adapting an Advance Care Planning Communication Intervention With American Indian and Alaska Native People in Primary Care. J Transcult Nurs. 2020 Mar;31(2):178-187. doi: 10.1177/1043659619859055. Epub 2019 Jul 1. | |
| 41974413 | Background | Shaw J, Medlock S, Singh RS, Piromalli C, Trainor JK, Johnson R, Rollolazo S, Fieldhouse C, Mortenson R, Landes SJ. Evaluating a tailored communication tool to increase advance care planning among Alaska Native and American Indian people in primary care: A type 1 hybrid effectiveness-implementation cluster randomized trial protocol. Contemp Clin Trials. 2026 Jun;165:108305. doi: 10.1016/j.cct.2026.108305. Epub 2026 Apr 12. |
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IPD will not be shared. All data owned by Tribal authority.
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| OTHER |
| University of Alaska Fairbanks | OTHER |
| National Institute of Nursing Research (NINR) | NIH |
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| Baseline, 3 months |
| 41001527 | Background | Singh RS, Landes SJ, Medlock S, Piromalli C, Mortenson R, Shaw J. Collaborative Implementation Planning to Jumpstart Advance Care Planning with Alaska Native and American Indian peoples in Primary Care. Res Sq [Preprint]. 2025 Sep 19:rs.3.rs-7400899. doi: 10.21203/rs.3.rs-7400899/v1. |