Factors Associated with African American and White Elders' Participation in a Brain Donation Program

Overview

Journal Alzheimer Dis Assoc Disord

Specialties Neurology
Psychiatry

Date 2010 Sep 22

PMID 20856099

Citations 26

Authors

Angela L Jefferson

Susan Lambe

Elana Cook

Monique Pimontel

Joseph Palmisano

Christine Chaisson

Affiliations

Soon will be listed here.

Abstract

This study examined factors associated with brain donation program participation among African American and White elders. By postal mail, participants were recruited from an Alzheimer's research registry (all of whom had been invited to participate in the Center's brain donation program) and asked to complete surveys assessing brain donation knowledge, trust in healthcare systems, and religiousness. African American respondents completed a cultural mistrust inventory. Demographic, brain donation status, and literacy data (as assessed by the Wide Range Achievement Test-3 Reading subtest) were compiled from the respondents' most recent registry visit. The survey response rate was 60% (n=184 White and n=49 Black respondents). Logistic regression, comparing religiousness, trust in healthcare institutions, and educational attainment, identified a single predictor (ie, religiousness) in the prediction of donation status among White respondents (P=0.008), whereas no predictors were observed for donation status among the Black respondents. Using all African American donors and nondonors from the registry (n=68), comparisons revealed Wide Range Achievement Test-3 Reading score differences for African American donors (46.8±5.9) and nondonors (42.8±8.4, P=0.02). Results suggest that increased religiousness is related to White elders' decisions not to donate, whereas lower reading ability might be related to African American participants' decisions not to donate.

Citing Articles

Prevalence of Concomitant Pathologies in Parkinson's Disease: Implications for Prognosis, Diagnosis, and Insights into Common Pathogenic Mechanisms.

Walker L, Attems J J Parkinsons Dis. 2023; 14(1):35-52.

PMID: 38143370 PMC: 10836576. DOI: 10.3233/JPD-230154.

Understanding the value of brain donation for research to donors, next-of-kin and clinicians: A systematic review.

Griffin C, Bowen J, Walker M, Lynam J, Paul C PLoS One. 2023; 18(12):e0295438.

PMID: 38117774 PMC: 10732432. DOI: 10.1371/journal.pone.0295438.

Attitude and concerns of healthy individuals regarding post-mortem brain donation. A qualitative study on a nation-wide sample in Italy.

Cattaneo C, Urakcheeva I, Giacomini G, Stazi M, Lana S, Arnofi A BMC Med Ethics. 2023; 24(1):104.

PMID: 38012766 PMC: 10683267. DOI: 10.1186/s12910-023-00980-3.

Intersectionality in Alzheimer's Disease: The Role of Female Sex and Black American Race in the Development and Prevalence of Alzheimer's Disease.

Misiura M, Butts B, Hammerschlag B, Munkombwe C, Bird A, Fyffe M Neurotherapeutics. 2023; 20(4):1019-1036.

PMID: 37490246 PMC: 10457280. DOI: 10.1007/s13311-023-01408-x.

A Qualitative Examination of Knowledge, Experiences, and Considerations of PET Brain Scan Participation Among Older Black and Latino Adults.

Glover C, Arfanakis K, Aggarwal N, Bennett D, Marquez D, Barnes L J Alzheimers Dis. 2022; 91(3):961-976.

PMID: 36530086 PMC: 10202010. DOI: 10.3233/JAD-220861.

References

Jefferson A, Byerly L, Vanderhill S, Lambe S, Wong S, Ozonoff A . Characterization of activities of daily living in individuals with mild cognitive impairment. Am J Geriatr Psychiatry. 2008; 16(5):375-83. PMC: 2682324. DOI: 10.1097/JGP.0b013e318162f197. View

Harris M . Diabetes in America: epidemiology and scope of the problem. Diabetes Care. 1998; 21 Suppl 3:C11-4. DOI: 10.2337/diacare.21.3.c11. View

Rose A, Peters N, Shea J, Armstrong K . Development and testing of the health care system distrust scale. J Gen Intern Med. 2004; 19(1):57-63. PMC: 1494688. DOI: 10.1111/j.1525-1497.2004.21146.x. View

Callender C, Miles P . Obstacles to organ donation in ethnic minorities. Pediatr Transplant. 2001; 5(6):383-5. DOI: 10.1034/j.1399-3046.2001.t01-2-00034.x. View

Minniefield W, Yang J, Muti P . Differences in attitudes toward organ donation among African Americans and whites in the United States. J Natl Med Assoc. 2001; 93(10):372-9. PMC: 2594069. View

Souder E, Trojanowski J . Autopsy: cutting away the myths. J Neurosci Nurs. 1992; 24(3):134-9. DOI: 10.1097/01376517-199206000-00003. View

Manly J, Jacobs D, Touradji P, Small S, Stern Y . Reading level attenuates differences in neuropsychological test performance between African American and White elders. J Int Neuropsychol Soc. 2002; 8(3):341-8. DOI: 10.1017/s1355617702813157. View

Park M . A statewide assessment of attitudes, beliefs, and behaviors among blacks toward donation. J Transpl Coord. 1998; 8(1):25-9. DOI: 10.7182/prtr.1.8.1.4742k61122312638. View

McKhann G, Drachman D, Folstein M, Katzman R, Price D, Stadlan E . Clinical diagnosis of Alzheimer's disease: report of the NINCDS-ADRDA Work Group under the auspices of Department of Health and Human Services Task Force on Alzheimer's Disease. Neurology. 1984; 34(7):939-44. DOI: 10.1212/wnl.34.7.939. View

10.

Froehlich T, Bogardus Jr S, Inouye S . Dementia and race: are there differences between African Americans and Caucasians?. J Am Geriatr Soc. 2001; 49(4):477-84. DOI: 10.1046/j.1532-5415.2001.49096.x. View

11.

Winblad B, Palmer K, Kivipelto M, Jelic V, Fratiglioni L, Wahlund L . Mild cognitive impairment--beyond controversies, towards a consensus: report of the International Working Group on Mild Cognitive Impairment. J Intern Med. 2004; 256(3):240-6. DOI: 10.1111/j.1365-2796.2004.01380.x. View

12.

Corbie-Smith G, Thomas S, Williams M . Attitudes and beliefs of African Americans toward participation in medical research. J Gen Intern Med. 1999; 14(9):537-46. PMC: 1496744. DOI: 10.1046/j.1525-1497.1999.07048.x. View

13.

Corbie-Smith G, Thomas S, St George D . Distrust, race, and research. Arch Intern Med. 2002; 162(21):2458-63. DOI: 10.1001/archinte.162.21.2458. View

14.

McPhee S, Bottles K, Lo B, Saika G, Crommie D . To redeem them from death. Reactions of family members to autopsy. Am J Med. 1986; 80(4):665-71. DOI: 10.1016/0002-9343(86)90822-3. View

15.

Harrell L, Callaway R, Powers R . Autopsy in dementing illness: who participates?. Alzheimer Dis Assoc Disord. 1993; 7(2):80-7. DOI: 10.1097/00002093-199307020-00003. View

16.

Bass 3rd P, Wilson J, Griffith C . A shortened instrument for literacy screening. J Gen Intern Med. 2003; 18(12):1036-8. PMC: 1494969. DOI: 10.1111/j.1525-1497.2003.10651.x. View

17.

Boulware L, Cooper L, Ratner L, LaVeist T, Powe N . Race and trust in the health care system. Public Health Rep. 2003; 118(4):358-65. PMC: 1497554. DOI: 10.1093/phr/118.4.358. View

18.

Petersen R . Mild cognitive impairment as a diagnostic entity. J Intern Med. 2004; 256(3):183-94. DOI: 10.1111/j.1365-2796.2004.01388.x. View

19.

Jefferson A, Lambe S, Moser D, Byerly L, Ozonoff A, Karlawish J . Decisional capacity for research participation in individuals with mild cognitive impairment. J Am Geriatr Soc. 2008; 56(7):1236-43. PMC: 2724182. DOI: 10.1111/j.1532-5415.2008.01752.x. View

20.

Freimuth V, Quinn S, Thomas S, Cole G, Zook E, Duncan T . African Americans' views on research and the Tuskegee Syphilis Study. Soc Sci Med. 2001; 52(5):797-808. DOI: 10.1016/s0277-9536(00)00178-7. View