4
views
0
recommends
+1 Recommend
1 collections
    0
    shares
      • Record: found
      • Abstract: found
      • Article: not found

      Facilitators, Challenges, and Messaging Strategies for Hispanic/Latino Populations Participating in Alzheimer’s Disease and Related Dementias Clinical Research: A Literature Review

      Read this article at

      ScienceOpenPublisherPubMed
      Bookmark
          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD) disproportionally affect Hispanic and Latino populations, yet Hispanics/Latinos are substantially underrepresented in AD/ADRD clinical research. Diverse inclusion in trials is an ethical and scientific imperative, as underrepresentation reduces the ability to generalize study findings and treatments across populations most affected by a disease. This paper presents findings from a narrative literature review (N = 210) of the current landscape of Hispanic/Latino participation in clinical research, including the challenges, facilitators, and communication channels to conduct culturally appropriate outreach efforts to increase awareness and participation of Hispanics/Latinos in AD/ADRD clinical research studies. Many challenges identified were systemic in nature: lack of culturally relevant resources; staffing that does not represent participants’ cultures/language; eligibility criteria that disproportionately excludes Hispanics/Latinos; and too few studies available in Hispanic/Latino communities. The paper also details facilitators and messaging strategies to improve engagement and interest among Hispanics/Latinos in AD/ADRD research, starting with approaches that recognize and address the heterogeneity of the Hispanic/Latino ethnicity, and then, tailor outreach activities and programs to address their diverse needs and circumstances. The needs identified in this article represent longstanding failures to improve engagement and interest among Hispanics/Latinos in AD/ADRD research; we discuss how the field can move forward learning from the experiences of the COVID-19 pandemic.

          Related collections

          Most cited references191

          • Record: found
          • Abstract: not found
          • Article: not found

          World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects.

          (2013)
            Bookmark
            • Record: found
            • Abstract: not found
            • Article: not found

            2017 ACC/AHA/AAPA/ABC/ACPM/AGS/APhA/ASH/ASPC/NMA/PCNA Guideline for the Prevention, Detection, Evaluation, and Management of High Blood Pressure in Adults

              Bookmark
              • Record: found
              • Abstract: found
              • Article: not found

              Low health literacy and health outcomes: an updated systematic review.

              Approximately 80 million Americans have limited health literacy, which puts them at greater risk for poorer access to care and poorer health outcomes. To update a 2004 systematic review and determine whether low health literacy is related to poorer use of health care, outcomes, costs, and disparities in health outcomes among persons of all ages. English-language articles identified through MEDLINE, CINAHL, PsycINFO, ERIC, and Cochrane Library databases and hand-searching (search dates for articles on health literacy, 2003 to 22 February 2011; for articles on numeracy, 1966 to 22 February 2011). Two reviewers independently selected studies that compared outcomes by differences in directly measured health literacy or numeracy levels. One reviewer abstracted article information into evidence tables; a second reviewer checked information for accuracy. Two reviewers independently rated study quality by using predefined criteria, and the investigative team jointly graded the overall strength of evidence. 96 relevant good- or fair-quality studies in 111 articles were identified: 98 articles on health literacy, 22 on numeracy, and 9 on both. Low health literacy was consistently associated with more hospitalizations; greater use of emergency care; lower receipt of mammography screening and influenza vaccine; poorer ability to demonstrate taking medications appropriately; poorer ability to interpret labels and health messages; and, among elderly persons, poorer overall health status and higher mortality rates. Poor health literacy partially explains racial disparities in some outcomes. Reviewers could not reach firm conclusions about the relationship between numeracy and health outcomes because of few studies or inconsistent results among studies. Searches were limited to articles published in English. No Medical Subject Heading terms exist for identifying relevant studies. No evidence concerning oral health literacy (speaking and listening skills) and outcomes was found. Low health literacy is associated with poorer health outcomes and poorer use of health care services. Agency for Healthcare Research and Quality.
                Bookmark

                Author and article information

                Journal
                Journal of Alzheimer's Disease
                JAD
                IOS Press
                13872877
                18758908
                June 29 2021
                June 29 2021
                : 82
                : 1
                : 107-127
                Affiliations
                [1 ]Division of Extramural Activities, National Institute on Aging, National Institutes of Health, Bethesda, MD, USA
                [2 ]Kelly Government, Kelly Services, Inc., Rockville, MD, USA
                [3 ]Fors Marsh Group, Arlington, VA, USA
                [4 ]Office of Communications and Public Liaison, National Institute on Aging, National Institutes of Health, Bethesda, MD, USA
                Article
                10.3233/JAD-201463
                33998537
                51550d94-ef61-46a6-b3ba-6ecede1c15e1
                © 2021
                History

                Comments

                Comment on this article