Hospice Decision MakingNCT04458090
Underutilization of Hospice in Older African Americans
A study testing A decision aid for patients considering Hospice care. in people with Hospice Decision Making, run by University of Colorado, Denver at 1 site in United States.
Trial summary
Despite the documented benefits of hospice, less than 2 million people utilize hospice services annually. Underuse disparities are extreme across race and ethnicity as White Americans comprise 85% of all hospice enrollees. Read more about this study
- Who is it for?
- Ages 65 years and olderHealthy volunteers can take part
- Conditions the study is for
- Hospice Decision Making
- What is being tested?
- A decision aid for patients considering Hospice care.
- Type of treatment
- Lifestyle or therapy programme
- Could I receive a placebo?
- No, everyone receives an active treatment
- How many people
- 144 participants
- Where
- 1 siteUnited States
- Study dates
- 1 Mar 2019to 30 Apr 2021
- Phase
- Interventional
- Are there results?
- Yes, posted in the registrySummary in the doctors' view
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 65 years and older
- All sexes
- Healthy volunteers accepted
- Older adult
Who may be able to join
- Self identify as Black or African American
- At least 65 years of age
Who cannot join
- Non-English speakers.
- Patients with cognitive Impairments preventing ability to provide informed consent.
Trial locations and contacts
1 site in 1 country.
United States1 site
University of Colorado Denver
Aurora, Colorado, 80045
About this study
Despite the documented benefits of hospice, less than 2 million people utilize hospice services annually. Underuse disparities are extreme across race and ethnicity as White Americans comprise 85% of all hospice enrollees. AAs account for only 8% of hospice enrollees but are more likely to die from the top three hospice diagnoses (i.e. cancer, heart disease and dementia) than White Americans. Even when AAs enroll in hospice, they spend less time in hospice than White patients, averaging fewer than seven days in hospice care. Notably, AA hospice enrollees report a higher degree of satisfaction with end of life care when hospice is involved, as compared to AAs who are not enrolled in hospice care. There are several potential barriers that may prevent AAs from enrolling in hospice care including lack of knowledge of hospice care, mistrust in healthcare, perceived discrimination, health literacy. AAs routinely report less knowledge of hospice than White Americans, and the information that AA know about hospice often comes from non-medical professionals and is inaccurate. Some AA have persistent mistrust in healthcare due to events such as the Tuskegee Syphilis Experiments and many AA perceive discrimination when accessing healthcare. Data shows that health literacy is a stronger predictor of hospice use than race and older AAs are more likely to possess low health literacy. The driving hypothesis of this research is that by providing clear and accurate information to older AAs will help address the underutilization of hospice by clarifying misperceptions, building trust, and overcoming literacy barriers. Patient decision aids (PtDAs) are an evidence-based approach to improve patient agency in medical decision making. Research shows that AA report a desire for more agency and autonomy in decision-making yet the use of PtDAs is understudied in AA communities. This proposal offers a unique opportunity to address many of the potential barriers that may prevent older AAs from enrolling in hospice, while simultaneously expanding the literature of SDM specific to older AAs. The goals of this proposal are to evaluate if the relationships between health literacy and hospice knowledge, attitudes, and beliefs is mediated by mistrust in healthcare and perceived discrimination among AAs aged 65 or older (Aim1) and to evaluate the effect of the hospice PtDA on changing hospice knowledge and attitudes and beliefs about hospice in AA aged 65 and older (Aim 2).
- Conditions
- Hospice Decision Making
- Being tested
- A decision aid for patients considering Hospice care.
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
A decision aid for patients considering Hospice care.Behavioural
A 12 page booklet and 17 min video describing hospice care
| Study group | Role | What they receive |
|---|---|---|
| Intervention | Experimental | Receive hospice patient decision aid Receives: Behavioral: A decision aid for patients considering Hospice care. |
| Control | No intervention | Does not receive hospice decision aid |
What is being measured
The primary outcome is the main question the study is designed to answer.
Hospice Knowledge Scale
Hospice Knowledge Scale is a 23-item true/false scale. Each question is worth 1 point with 23 being the highest score. Possible scores range from 0 to 23, with higher scores indicate more hospice knowledge.
Measured: 1 month
Hospice Attitudes and Beliefs Scale
Hospice Attitudes and Beliefs Scale is an 8-item 5-point Likert scale (ranging from Strongly Agree to Strongly Disagree). Each question is scored based on 5 point scale. Maximum score 40 and minimum score 8. Higher scores indicate more favorable opinions of hospice.
Measured: 1 month
Decision Self Efficacy Scale
Decision Self-Efficacy Scale is an 11-item 5-point Likert scale (ranging from not at all confident to very confident). Maximum score is 100 and minimum score is 0. Higher scores indicate more self-efficacy.
Measured: 1 month
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted7 Jul 2020
- Study start1 Mar 2019
- Primary completion30 Apr 2021
- Study completion30 Apr 2021
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Posted resultsParticipant flow, outcome measures and adverse events reported by the sponsor.
- Publications (3)Papers the sponsor has linked to this study.
- Other trials for Hospice Decision MakingStudies of the same condition, open and under way.
- More trials run by University of Colorado, DenverThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Interventional
- Phase
- Phase N/A
- Primary purpose
- Health services research
- Allocation
- Randomised
- Intervention model
- Parallel groups
- Masking
- Single blind
- Who is masked
- Participant
- Enrolment
- 144 participants (actual)
Sponsor and investigators
- Lead sponsor
- University of Colorado, Denver
- Sponsor type
- University, hospital or other
- Collaborators
- National Institute on Aging (NIA)
- Responsible party
- Sponsor
- Investigators
- Channing E Tate, MPH, PhD(c), Principal investigator, University of Colorado, Denver
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT04458090
- Sponsor's protocol ID
- 18-1675
- Other IDs
- R36AG064135
- Status last verified
- Jun 2026
- First submitted
- 30 Jun 2020
- Last updated
- 17 Jul 2026
- Results posted
- Yes, on ClinicalTrials.gov
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No
Publications
Tate CE, Perez-Jolles M, Scherer LD, Shiferaw T, Mami G, Matlock DD, Huebschmann AG. "Hospice was Created by the KKK"-Black Americans' Perspectives on Hospice Care. J Racial Ethn Health Disparities. 2026 Apr;13(2):1374-1381. doi: 10.1007/s40615-025-02340-w. Epub 2025 Feb 27.
PubMed 40014286Brereton E, Harger G, Matlock DD, Dorsey Holliman B, Tate CE. How Do Patients Describe Hospice Care? A Qualitative Analysis of the Language Used by Older Adults to Describe Hospice Care. J Palliat Med. 2022 Nov;25(11):1692-1696. doi: 10.1089/jpm.2022.0011. Epub 2022 Aug 9.
PubMed 35944273Tate CE, Venechuk G, Pierce K, Khazanie P, Ingle MP, Morris MA, Allen LA, Matlock DD. Development of a Decision Aid for Patients and Families Considering Hospice. J Palliat Med. 2021 Apr;24(4):505-513. doi: 10.1089/jpm.2020.0250. Epub 2021 Jan 13.
PubMed 33439075
Study at a glance
From the registry record, last updated by the sponsor on 17 Jul 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Underutilization of Hospice in Older African Americans
- ClinicalTrials.gov ID
- NCT04458090
- Acronym / sponsor ID
- 18-1675
- Conditions
- Hospice Decision Making
- Study type
- Interventional
- Recruitment status
- Completed
- Enrolment
- 144 participants (actual)
- Lead sponsor
- University of Colorado, DenverUniversity, hospital or other
- Collaborators
- National Institute on Aging (NIA)
- Study start
- 1 Mar 2019 (actual)
- Primary completion
- 30 Apr 2021 (actual)
- Study completion
- 30 Apr 2021 (actual)
- First posted
- 7 Jul 2020 (actual)
- Results
- Posted 30 Aug 2022
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
Despite the documented benefits of hospice, less than 2 million people utilize hospice services annually. Underuse disparities are extreme across race and ethnicity as White Americans comprise 85% of all hospice enrollees. AAs account for only 8% of hospice enrollees but are more likely to die from the top three hospice diagnoses (i.e. cancer, heart disease and dementia) than White Americans. Even when AAs enroll in hospice, they spend less time in hospice than White patients, averaging fewer than seven days in hospice care. Notably, AA hospice enrollees report a higher degree of satisfaction with end of life care when hospice is involved, as compared to AAs who are not enrolled in hospice care. There are several potential barriers that may prevent AAs from enrolling in hospice care including lack of knowledge of hospice care, mistrust in healthcare, perceived discrimination, health literacy. AAs routinely report less knowledge of hospice than White Americans, and the information that AA know about hospice often comes from non-medical professionals and is inaccurate. Some AA have persistent mistrust in healthcare due to events such as the Tuskegee Syphilis Experiments and many AA perceive discrimination when accessing healthcare. Data shows that health literacy is a stronger predictor of hospice use than race and older AAs are more likely to possess low health literacy. The driving hypothesis of this research is that by providing clear and accurate information to older AAs will help address the underutilization of hospice by clarifying misperceptions, building trust, and overcoming literacy barriers. Patient decision aids (PtDAs) are an evidence-based approach to improve patient agency in medical decision making. Research shows that AA report a desire for more agency and autonomy in decision-making yet the use of PtDAs is understudied in AA communities. This proposal offers a unique opportunity to address many of the potential barriers that may prevent older AAs from enrolling in hospice, while simultaneously expanding the literature of SDM specific to older AAs. The goals of this proposal are to evaluate if the relationships between health literacy and hospice knowledge, attitudes, and beliefs is mediated by mistrust in healthcare and perceived discrimination among AAs aged 65 or older (Aim1) and to evaluate the effect of the hospice PtDA on changing hospice knowledge and attitudes and beliefs about hospice in AA aged 65 and older (Aim 2).
Study design
- Primary purpose
- Health services research
- Allocation
- Randomised
- Intervention model
- Parallel groups
- Masking
- Single blind (participant)
- Number of arms
- 2
| Arm | Type | Receives |
|---|---|---|
| Intervention | Experimental | Behavioral: A decision aid for patients considering Hospice care.Receive hospice patient decision aid |
| Control | No intervention | –Does not receive hospice decision aid |
Who may qualify
- Ages
- 65 years and older
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Older adult
Key inclusion criteria (2 listed)
- Self identify as Black or African American
- At least 65 years of age
Key exclusion criteria (2 listed)
- Non-English speakers.
- Patients with cognitive Impairments preventing ability to provide informed consent.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| A decision aid for patients considering Hospice care.A 12 page booklet and 17 min video describing hospice care | Behavioural | Intervention |
Primary outcome
Hospice Knowledge Scale
Time frame: 1 month
Hospice Knowledge Scale is a 23-item true/false scale. Each question is worth 1 point with 23 being the highest score. Possible scores range from 0 to 23, with higher scores indicate more hospice knowledge.
Hospice Attitudes and Beliefs Scale
Time frame: 1 month
Hospice Attitudes and Beliefs Scale is an 8-item 5-point Likert scale (ranging from Strongly Agree to Strongly Disagree). Each question is scored based on 5 point scale. Maximum score 40 and minimum score 8. Higher scores indicate more favorable opinions of hospice.
Decision Self Efficacy Scale
Time frame: 1 month
Decision Self-Efficacy Scale is an 11-item 5-point Likert scale (ranging from not at all confident to very confident). Maximum score is 100 and minimum score is 0. Higher scores indicate more self-efficacy.
Results and safety
Loading the posted results from ClinicalTrials.gov…
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 17 Jul 2026.
- Posted resultsParticipant flow, baseline, all outcome measures and adverse events.
- Derived from this study: PubMed 40014286Tate CE, Perez-Jolles M, Scherer LD, Shiferaw T, Mami G, Matlock DD, Huebschmann AG. "Hospice was Created by the KKK"-Black Americans' Perspectives on Hospice Care. J Racial Ethn Health Disparities. 2026 Apr;13(2):1374-1381. doi: 10.1007/s40615-025-02340-w. Epub 2025 Feb 27.
- Derived from this study: PubMed 35944273Brereton E, Harger G, Matlock DD, Dorsey Holliman B, Tate CE. How Do Patients Describe Hospice Care? A Qualitative Analysis of the Language Used by Older Adults to Describe Hospice Care. J Palliat Med. 2022 Nov;25(11):1692-1696. doi: 10.1089/jpm.2022.0011. Epub 2022 Aug 9.
- Derived from this study: PubMed 33439075Tate CE, Venechuk G, Pierce K, Khazanie P, Ingle MP, Morris MA, Allen LA, Matlock DD. Development of a Decision Aid for Patients and Families Considering Hospice. J Palliat Med. 2021 Apr;24(4):505-513. doi: 10.1089/jpm.2020.0250. Epub 2021 Jan 13.
- Individual participant dataSharing planned: No
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Channing E Tate, MPH, PhD(c) principal investigator
University of Colorado, Denver
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A study testing A decision aid for patients considering Hospice care. in people with Hospice Decision Making, run by University of Colorado, Denver at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 2 inclusion and 2 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 17 Jul 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
Yes. Results are posted in the registry (first posted 30 Aug 2022). A summary is in the For doctors view, and the full results are on ClinicalTrials.gov.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Hospice Knowledge Scale (time frame: 1 month). The study lists 3 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT04458090, which also lists 3 linked publications.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 17 Jul 2026.