Active — Not RecruitingNot Applicable

I Kua na'u Advance Care Planning for Native Hawaiian Elders

United States220 participantsStarted 2023-03-16

Plain-language summary

Communication surrounding serious illness decision making is formalized in Advance Care Planning (ACP), a process involving verbal or written information designed to inform patients of possible medical options including palliative and hospice care services. Numerous studies have suggested that improved ACP rates better align health care delivery with patient preferences. Despite expansion of ACP services in the health care system, Native Hawaiians (NHs) consistently have negligible rates of ACP and low use of palliative and hospice care services. To address these shortcomings, our multi-disciplinary community and research group has partnered to create the I kua na'u "Let Me Carry Out Your Last Wishes" ACP video intervention. Our Community-Based Collaborative Approach will create, develop and test the I kua na'u comprehensive video-based ACP program honoring the history, opinions, and culture of NHs. Indeed, NH culture is primarily an oral tradition in which the spoken word permeates the life of NHs and is the normal way of interacting with neighbors, including in its most recent adaptation with the use of video media. The I kua na'u program will include videos tailored for the different settings in which older NHs live and get medical care. The videos will explain the importance of ACP, empower NHs to tell their story ('olelo Kama'ilio; "Talk Story") by allowing the recording of personal video declarations of ACP wishes, and the ability to share the personal video declaration with family, friends and clinicians. The overall objective is to conduct a five-year program that includes two years of development of the I kua na'u ACP video program with focus group testing, and then three years of implementation in the NH community. Demonstrating the effectiveness of using the video program in NHs represents an essential step to implement this tool in practice. The Specific Aim is to compare the ACP engagement, knowledge, decisional conflict, and ACP completion rates in 220 NHs over the age of 55 in: (a) a pre-post study design in 110 people living on Homestead or Assisted Living using the video intervention, and (b) a randomized trial of 110 people recruited from Ambulatory Clinics.

Who can participate

Age range

55 Years

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion criteria

. NH adult \> 55 years of age;
. Pre-existing relationship with a primary care provider (PCP, minimum of two prior visits to PCP);
. Referral by collaborating community organization.

Exclusion criteria

. inability to view videos due to visual impairment (worse than 20/200 corrected);
. psychological state not appropriate for ACP discussions as determined by RA or clinician;
. cognitive impairment (≥2 errors) as assessed by the validated Short Portable Mental Status Questionnaire.

Questions worth asking your doctor

Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.

1This trial is specifically designed for Native Hawaiian elders — given that my background and community context are a big part of how this program works, is this study likely to be a good cultural fit for me or my family member?
2Since this trial is no longer actively recruiting, is there any chance of joining a waitlist, or are there similar advance care planning programs designed for Native Hawaiian communities that my doctor could connect me to instead?
3The study is measuring changes in advance care planning knowledge before and after the program — can you help me understand what that means practically, and whether going through this kind of program might help me make better decisions about my own future medical care?
4Because this is listed as Phase NA, which means it's more of a behavioral or educational study than a drug trial, what are the realistic risks or downsides of participating in an advance care planning program like this one?
5If I can't join this trial right now, is there a standard advance care planning process you'd recommend we start together now, so I'm not waiting to begin thinking through my end-of-life care preferences?

Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.

Questions for the trial coordinator

The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.

1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?

A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.

What they're measuring

Change in ACP Knowledge (Pre-Post Trial)

Timeframe: Baseline, 6 weeks, 3 months, 6 months

Change in ACP Knowledge (RCT)

Timeframe: Baseline, 6 weeks, 3 months, 6 months

Trial details

NCT IDNCT04771208

SponsorTufts Medical Center

Sponsor typeOTHER

Study typeINTERVENTIONAL

Primary completion2026-03-31

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