Clinical trial NCT04458090: Underutilization of Hospice in Older African Americans
Official title: Underutilization of Hospice in Older African Americans
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Hospice Decision Making
Lead sponsor: University of Colorado, Denver
Sponsor class: OTHER
Collaborators: name: National Institute on Aging (NIA)
First posted: 2020-07-07
Enrollment: 144
Sex: ALL
Minimum age (years): 65
Standard ages: OLDER_ADULT
Accepts healthy volunteers: yes
Allocation: RANDOMIZED
Intervention model: PARALLEL
Primary purpose: HEALTH_SERVICES_RESEARCH

Brief 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. 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).


Eligibility criteria: Inclusion Criteria:

* Self identify as Black or African American
* At least 65 years of age

Exclusion Criteria:

* Non-English speakers.
* Patients with cognitive Impairments preventing ability to provide informed consent.

Primary outcomes:
measure: Hospice Knowledge Scale
timeFrame: 1 month
measure: Hospice Attitudes and Beliefs Scale
timeFrame: 1 month
measure: Decision Self Efficacy Scale
timeFrame: 1 month
Secondary outcomes:
Other outcomes:
Locations:
city: Aurora
country: United States
facility: University of Colorado Denver
state: Colorado
Study officials:
affiliation: University of Colorado, Denver
name: Channing E Tate, MPH, PhD(c)
role: PRINCIPAL_INVESTIGATOR
References:
citation: Brereton 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.
citation: Tate 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.