Including Socially Isolated Black, Older Old Adults (Aged 80 and Above) with and without Mild Cognitive Impairment in a Clinical Trial: Recruitment Strategies and Perspectives

References

• Alzheimer’s Association. 2018 Alzheimer’s disease facts and figures. Alzheimers Dement. 2018;14(3):367–429. doi:10.1016/j.jalz.2018.02.001
   Web of Science ®Google Scholar
• Ighodaro ET, Nelson PT, Kukull WA, et al. Challenges and considerations related to studying dementia in Blacks/African Americans. J Alzheimers Dis. 2017;60(1):1–10. doi:10.3233/JAD-170242
   PubMed Web of Science ®Google Scholar
• Bahls C Health policy brief: achieving equity in health. Health Aff. 2011;6:1–6. doi:10.1377/hpb20111006.957918/
   Google Scholar
• Graff-Radford NR, Besser LM, Crook JE, Kukull WA, Dickson DW. Neuropathologic differences by race from the National Alzheimer’s Coordinating Center. Alzheimers Dement. 2016;12(6):669–677. doi:10.1016/j.jalz.2016.03.004
   PubMed Web of Science ®Google Scholar
• Shadlen MF, Siscovick D, Fitzpatrick AL, Dulberg C, Kuller LH, Jackson S. Education, cognitive test scores, and black‐white differences in dementia risk. J Am Geriatr Soc. 2006;54(6):898–905. doi:10.1111/j.1532-5415.2006.00747.x
   PubMed Web of Science ®Google Scholar
• Zuckerman IH, Ryder PT, Simoni-Wastila L, et al. Racial and ethnic disparities in the treatment of dementia among medicare beneficiaries. J Gerontol B Psychol Sci Soc Sci. 2008;63(5):S328–S333. doi:10.1093/geronb/63.5.S328
   PubMed Web of Science ®Google Scholar
• Franzen S, Smith JE, van den Berg E, et al. Diversity in Alzheimer’s disease drug trials: the importance of eligibility criteria. Alzheimers Dement. 2022;18(4):810–823. doi:10.1002/alz.12433
   PubMed Web of Science ®Google Scholar
• Gilmore-Bykovskyi A, Croff R, Glover CM, et al. Traversing the aging research and health equity divide: toward intersectional frameworks of research justice and participation. Gerontologist. 2022;62(5):711–720. doi:10.1093/geront/gnab107
   PubMed Web of Science ®Google Scholar
• Corbie-Smith G. The continuing legacy of the Tuskegee syphilis study: considerations for clinical investigation. Am J Med Sci. 1999;317(1):5–8. doi:10.1016/S0002-9629(15)40464-1
   PubMed Web of Science ®Google Scholar
• Rivers D, August EM, Sehovic I, Green BL, Quinn GP. A systematic review of the factors influencing African Americans’ participation in cancer clinical trials. Contemp Clin Trials. 2013;35(2):13–32. doi:10.1016/j.cct.2013.03.007
   PubMed Web of Science ®Google Scholar
• Grette KV, White AL, Awad EK, et al. Not immune to inequity: minority under-representation in immunotherapy trials for breast and gynecologic cancers. Int J Gynecol Cancer. 2021;31(11):1403–1407. doi:10.1136/ijgc-2021-002557
   PubMed Web of Science ®Google Scholar
• DeFilippis EM, Echols M, Adamson PB, et al. Improving enrollment of underrepresented racial and ethnic populations in heart failure trials: a call to action from the Heart Failure Collaboratory. JAMA Cardiol. 2022;7(5):540–548. doi:10.1001/jamacardio.2022.0161
   PubMed Web of Science ®Google Scholar
• Yu K, Wild K, Potempa K, et al. The Internet-based Conversational Engagement Clinical Trial (I-CONECT) in socially isolated adults 75+ years old: randomized controlled trial protocol and COVID-19 related study modifications. Front Digit Health. 2021;3:714813. doi:10.3389/fdgth.2021.714813
   PubMedGoogle Scholar
• Dodge HH, Zhu J, Mattek NC, et al. Web-enabled conversational interactions as a method to improve cognitive functions: results of a 6-week randomized controlled trial. Alzheimer Dement. 2015;1(1):1–12. doi:10.1016/j.trci.2015.01.001
   Google Scholar
• Lubben J, Blozik E, Gillmann G, et al. Performance of an abbreviated version of the Lubben social network scale among three European community-dwelling older adult populations. Gerontologist. 2006;46(4):503–513. doi:10.1093/geront/46.4.503
   PubMed Web of Science ®Google Scholar
• Hughes ME, Waite LJ, Hawkley LC, Cacioppo JT. A short scale for measuring loneliness in large surveys: results from two population-based studies. Res Aging. 2004;26(6):655–672. doi:10.1177/0164027504268574
   PubMed Web of Science ®Google Scholar
• Yesavage JA, Brink TL, Rose TL, et al. Development and validation of a geriatric depression screening scale: a preliminary report. J Psychiatr Res. 1982;17(1):37–49. doi:10.1016/0022-3956(82)90033-4
   PubMed Web of Science ®Google Scholar
• Albert MS, DeKosky ST, Dickson D, et al. The diagnosis of mild cognitive impairment due to Alzheimer’s disease: recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimers Dement. 2011;7(3):270–279. doi:10.1016/j.jalz.2011.03.008
   PubMed Web of Science ®Google Scholar
• Jack CR, Albert MS, Knopman DS, et al. Introduction to the recommendations from the national institute on aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimer Dement. 2011;7(3):257–262. doi:10.1016/j.jalz.2011.03.004
   PubMed Web of Science ®Google Scholar
• McKhann GM, Knopman DS, Chertkow H, et al. The diagnosis of dementia due to Alzheimer’s disease: recommendations from the National Institute on Aging-Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease. Alzheimer Dement. 2011;7(3):263–269. doi:10.1016/j.jalz.2011.03.005
   PubMed Web of Science ®Google Scholar
• Levkoff SE, Levy BR, Weitzman PF. The matching model of recruitment. J Ment Health Aging. 2000;6(1):29–38.
   Google Scholar
• Levkoff S, Sanchez H. Lessons learned about minority recruitment and retention from the centers on minority aging and health promotion. Gerontologist. 2003;43(1):18–26. doi:10.1093/geront/43.1.18
   PubMed Web of Science ®Google Scholar
• Brown G, Marshall M, Bower P, Woodham A, Waheed W. Barriers to recruiting ethnic minorities to mental health research: a systematic review. Int J Methods Psychiatr Res. 2014;23(1):36–48. doi:10.1002/mpr.1434
   PubMed Web of Science ®Google Scholar
• Dreer LE, Weston J, Owsley C. Strategic planning for recruitment and retention of older African Americans in health promotion research programs. J Health Dispar Res Pract. 2014;7(2):14–33.
   PubMedGoogle Scholar
• George S, Duran N, Norris K. A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. Am J Public Health. 2014;104(2):e16–e31. doi:10.2105/AJPH.2013.301706
   PubMed Web of Science ®Google Scholar
• Graham LA, Ngwa J, Ntekim O, et al. Best strategies to recruit and enroll elderly blacks into clinical and biomedical research. Clin Interv Aging. 2018;13:43–50. doi:10.2147/CIA.S130112
   PubMed Web of Science ®Google Scholar
• Chadiha LA, Washington OG, Lichtenberg PA, Green CR, Daniels KL, Jackson JS. Building a registry of research volunteers among older urban African Americans: recruitment processes and outcomes from a community-based partnership. Gerontologist. 2011;51(3 Suppl 1):S106–S115. doi:10.1093/geront/gnr034
   PubMedGoogle Scholar
• Kawas CH. The oldest old and the 90+ Study. Alzheimers Dement. 2008;4(1):S56–S59. doi:10.1016/j.jalz.2007.11.007
   PubMed Web of Science ®Google Scholar
• Paganini-Hill A, Kawas CH, Corrada MM. Activities and mortality in the elderly: the Leisure World Cohort Study. J Gerontol a Biol Sci Med Sci. 2011;66(5):559–567. doi:10.1093/gerona/glq237
   PubMed Web of Science ®Google Scholar
• Perry AB, Romer C, Barr A Why is life expectancy so low in Black neighborhoods? Brookings; 2021. Available from: https://www.brookings.edu/blog/the-avenue/2021/12/20/why-is-life-expectancy-so-low-in-black-neighborhoods/. Accessed January 16, 2022.
   Google Scholar
• Taylor RJ, Chatters LM, Taylor HO. Race and objective social isolation: older African Americans, black Caribbeans, and non-Hispanic whites. J Gerontol B Psychol Sci Soc Sci. 2019;74(8):1429–1440. doi:10.1093/geronb/gby114
   PubMed Web of Science ®Google Scholar
• Finlay JM, Kobayashi LC. Social isolation and loneliness in later life: a parallel convergent mixed-methods case study of older adults and their residential contexts in the Minneapolis metropolitan area, USA. Soc Sci Med. 2018;208:25–33. doi:10.1016/j.socscimed.2018.05.010
   PubMed Web of Science ®Google Scholar
• Heu LC, Hansen N, van Zomeren M, et al. Loneliness across cultures with different levels of social embeddedness: a qualitative study. Pers Relatsh. 2021;28(2):379–405. doi:10.1111/pere.12367
   Web of Science ®Google Scholar
• Mody L, Miller DK, McGloin JM, et al. Recruitment and retention of older adults in aging research. J Am Geriatr Soc. 2008;56(12):2340–2348. doi:10.1111/j.1532-5415.2008.02015.x
   PubMed Web of Science ®Google Scholar
• Danner DD, Darnell KR, McGuire C. African American participation in Alzheimer’s disease research that includes brain donation. Am J Alzheimers Dis Other Demen. 2011;26(23):469–476. doi:10.1177/1533317511423020
   PubMedGoogle Scholar
• Johnson JH, Appold SJ. US older adults: demographics, living arrangements, and barriers to aging in place. Kenan Institute; 2017:1–29. Available from: http://www.kenaninstitute.unc.edu/wp-content/uploads/2017/06/AgingInPlace_06092017.pdf. Accessed January 23, 2022.
   Google Scholar
• Dyall L, Kepa M, Hayman K, et al. Engagement and recruitment of Māori and non-Māori people of advanced age to LiLACS NZ. Aust N Z J Public Health. 2013;37(2):124–131. doi:10.1111/1753-6405.12029
   PubMed Web of Science ®Google Scholar
• Pascucci MA, Chu N, Leasure AR. Health promotion for the oldest of old people. Nurs Older People. 2012;24(3):22–28. doi:10.7748/nop2012.04.24.3.22.c9017
   PubMedGoogle Scholar
• Davies K, Collerton JC, Jagger C, et al. Engaging the oldest old in research: lessons from the Newcastle 85+ study. BMC Geriatr. 2010;10(1):1–9. doi:10.1186/1471-2318-10-64
   PubMedGoogle Scholar
• Ewart CV, Fearon NA, Lund ME, et al. Subject recruitment, retention, and protocol feasibility in a prospective study of nutritional risk among urban, frail homebound elders. J Nutr Elder. 2001;21(1):1–21. doi:10.1300/J052v21n01_01
   Google Scholar