Hispanic Perspectives on Parkinson's Disease Care and Research Participation

Lisa Damron, Irene Litvan, Ece Bayram, Sarah Berk, Bernadette Siddiqi, Holly Shill, Lisa Damron, Irene Litvan, Ece Bayram, Sarah Berk, Bernadette Siddiqi, Holly Shill

Abstract

Background: Hispanics are under-represented in Parkinson's disease (PD) research despite the importance of diversity for results to apply to a wide range of patients.

Objective: To investigate the perspective of Hispanic persons with Parkinson disease (PWP) regarding awareness, interest, and barriers to participation in research.

Methods: We developed and administered a survey and qualitative interview in English and Spanish. For the survey, 62 Hispanic and 38 non-Hispanic PWP linked to a tertiary center were recruited in Arizona. For interviews, 20 Hispanic PWP, 20 caregivers, and six physicians providing service to Hispanic PWP in the community were recruited in California. Survey responses of Hispanic and non-Hispanic PWP were compared. Major survey themes were identified by applying grounded theory and open coding.

Results: The survey found roughly half (Q1 54%, Q2 55%) of Hispanic PWP linked to a tertiary center knew about research; there was unawareness among community Hispanic PWP. Most preferred having physician recommendations for research participation and were willing to participate. Hispanics preferred teams who speak their native language and include family. Research engagement, PD knowledge, role of family, living with PD, PD care, pre-diagnosis/diagnosis emerged as themes from the interview.

Conclusion: Barriers exist for participation of Hispanic PWP in research, primarily lack of awareness of PD research opportunities. Educating physicians of the need to encourage research participation of Hispanic PWP can address this. Physicians need to be aware of ongoing research and should not assume PWP disinterest. Including family members and providing research opportunities in their native language can increase research recruitment.

Keywords: Health services research; Parkinson’s disease; hispanic; minority health; research access; research barriers.

Conflict of interest statement

Authors’ disclosures available online (https://www.j-alz.com/manuscript-disclosures/21-0231r1).

Figures

Fig. 1
Fig. 1
Survey responses of Hispanic and non-Hispanic PWP compared using categorical data.
Fig. 2
Fig. 2
Survey responses of Hispanic and non-Hispanic PWP compared using ordinal data.

References

    1. Marras C, Beck JC, Bower JH, Roberts E, Ritz B, Ross GW, Abbott RD, Savica R, Van Den Eeden SK, Willis AW, Tanner C (2018) Prevalence of Parkinson’s disease across North America. NPJ Parkinsons Dis 4, 21.
    1. Nussbaum RL, Ellis CE (2003) Alzheimer’s disease and Parkinson’s disease. N Engl J Med 348, 1356–1364.
    1. Dahodwala N, Siderowf A, Xie M, Noll E, Stern M, Mandell DS (2009) Racial differences in the diagnosis of Parkinson’s disease. Mov Disord 24, 1200–1205.
    1. Wallington SF, Luta G, Noone AM, Caicedo L, Lopez-Class M, Sheppard V, Spencer C, Mandelblatt J (2012) Assessing the awareness of and willingness to participate in cancer clinical trials among immigrant Latinos. J Community Health 37, 335–343.
    1. Ennis SR, Rios-Vargas M, Albert NG (2011) The Hispanic Population: 2010 Census Briefs. U.S. Census Bureau, Suitland, MD.
    1. Ceballos RM, Knerr S, Scott MA, Hohl SD, Malen RC, Vilchis H, Thompson B (2014) Latino beliefs about biomedical research participation: A qualitative study on the U.S.-Mexico border. J Empir Res Hum Res Ethics 9, 10–21.
    1. Arevalo M, Heredia NI, Krasny S, Rangel ML, Gatus LA, McNeill LH, Fernandez ME (2016) Mexican-American perspectives on participation in clinical trials: A qualitative study. Contemp Clin Trials Commun 4, 52–57.
    1. Calderón JL, Baker RS, Fabrega H, Conde JG, Hays RD, Fleming E, Norris K (2006) An ethno-medical perspective on research participation: A qualitative pilot study. MedGenMed 8, 23.
    1. Evans KR, Lewis MJ, Hudson S V (2012) The role of health literacy on African American and Hispanic/Latino perspectives on cancer clinical trials. J Cancer Educ 27, 299–305.
    1. Ford ME, Siminoff LA, Pickelsimer E, Mainous AG, Smith DW, Diaz VA, Soderstrom LH, Jefferson MS, Tilley BC (2013) Unequal burden of disease, unequal participation in clinical trials: Solutions from African American and Latino community members. Health Soc Work 38, 29–38.
    1. Schneider MG, Swearingen CJ, Shulman LM, Ye J, Baumgarten M, Tilley BC (2009) Minority enrollment in Parkinson’s disease clinical trials. Parkinsonism Relat Disord 15, 258–262.
    1. US Census Bureau: Quick Facts San Diego County, California; Imperial County, California, .
    1. Tilley BC, Mainous AG, Elm JJ, Pickelsimer E, Soderstrom LH, Ford ME, Diaz VA, Siminoff LA, Burau K, Smith DW (2012) A randomized recruitment intervention trial in Parkinson’s disease to increase participant diversity: Early stopping for lack of efficacy. Clin Trials 9, 188–197.
    1. Mainous AG, Smith DW, Geesey ME, Tilley BC (2006) Development of a measure to assess patient trust in medical researchers. Ann Fam Med 4, 247–252.
    1. Scott JC, Glaser BG (1971) The discovery of grounded theory: Strategies for qualitative research. Am Sociol Rev 36, 335.
    1. Provalis research, QDA MINER LITE - Free qualitative data analysis software, .
    1. Jefferson AL, Lambe S, Chaisson C, Palmisano J, Horvath KJ, Karlawish J (2011) Clinical research participation among aging adults enrolled in an Alzheimer’s disease center research registry. J Alzheimers Dis 23, 443–452.
    1. Branson CO, Ferree A, Hohler AD, Saint-Hilaire M-H (2016) Racial disparities in Parkinson disease: A systematic review of the literature. Adv Parkinsons Dis 05, 87–96.
    1. Branson C, Bissonette S, Johnson T, Weinberg J, Saint-Hilaire M (2018) Recruitment of minority populations with Parkinson’s disease at an urban hospital. Mov Disord 33, S400.
    1. Guillemin M, McDougall R, Martin D, Hallowell N, Brookes A, Gillam L (2017) Primary care physicians’ views about gatekeeping in clinical research recruitment: A qualitative study. AJOB Empir Bioeth 8, 99–105.
    1. Nuytemans K, Manrique CP, Uhlenberg A, Scott WK, Cuccaro ML, Luca C, Singer C, Vance JM (2019) Motivations for participation in Parkinson disease genetic research among Hispanics versus non-Hispanics. Front Genet 10, 658.
    1. Gallagher-Thompson D, Solano N, Coon D, Areán P (2003) Recruitment and retention of Latino dementia family caregivers in intervention research: Issues to face, lessons to learn. Gerontologist 43, 45–51.
    1. Hildebrand JA, Billimek J, Olshansky EF, Sorkin DH, Lee JA, Evangelista LS (2018) Facilitators and barriers to research participation: Perspectives of Latinos with type 2 diabetes. Eur J Cardiovasc Nurs 17, 737–741.
    1. Ibrahim S, Sidani S (2014) Strategies to recruit minority persons: A systematic review. J Immigr Minor Health 16, 882–888.
    1. Cutts T, Langdon S, Meza FR, Hochwalt B, Pichardo-Geisinger R, Sowell B, Chapman J, Dorton LB, Kennett B, Jones MT (2016) Community health asset mapping partnership engages Hispanic/Latino health seekers and providers. N C Med J 77, 160–167.
    1. Bonevski B, Randell M, Paul C, Chapman K, Twyman L, Bryant J, Brozek I, Hughes C (2014) Reaching the hard-to-reach: A systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC Med Res Methodol 14, 42.
    1. Ulrich A, Thompson B, Livaudais JC, Espinoza N, Cordova A, Coronado GD (2013) Issues in biomedical research: What do Hispanics think? Am J Health Behav 37, 80–85.
    1. Katz RV, Kegeles SS, Kressin NR, Green BL, Min QW, James SA, Russell SL, Claudio C (2006) The Tuskegee Legacy Project: Willingness of minorities to participate in biomedical research. J Health Care Poor Underserved 17, 698–715.
    1. Schrag A, Ben-Shlomo Y, Quinn N (2002) How valid is the clinical diagnosis of Parkinson’s disease in the community? J Neurol Neurosurg Psychiatry 73, 529–534.
    1. Aranda MP (2001) Racial and ethnic factors in dementia care-giving research in the US. Aging Ment Health 5, 116–123.
    1. O’Brien EM (1993) Latinos in higher education. Res Briefs 4, 1–15.
    1. Office of the Surgeon General (US); Center for Mental Health Services (US); National Institute of Mental Health (US) (2001) Mental Health: Culture, Race, and Ethnicity—A Supplement to Mental Health: A Report of the Surgeon General, Rockville, MD.
    1. Fitzsimmons PR, Michael BD, Hulley JL, Scott GO (2010) A readability assessment of online Parkinson’s disease information. J R Coll Physicians Edinb 40, 292–296.
    1. Kutner JS, Steiner JF, Corbett KK, Jahnigen DW, Barton PL (1999) Information needs in terminal illness. Soc Sci Med 48, 1341–1352.
    1. Whetten-Goldstein K, Sloan F, Kulas E, Cutson T, Schenkman M (1997) The burden of Parkinson’s disease on society, family, and the individual. J Am Geriatr Soc 45, 844–849.
    1. Maldonado D (1985) The Hispanic elderly: A sociohistorical framework for public policy. J Appl Gerontol 4, 18–27.
    1. Valle R (2014) Care giving across cultures: Working with dementing illness and ethnically diverse populations, Routledge, Washington, DC.
    1. The National Institute on Aging (2020) Report of 2019-2020 Scientific Advances for the Prevention, Treatment, and Care of Dementia: The Urgent Need for Increased and Diverse Participation in Studies, Bethesda, MD.
    1. California Department of Public Health (2021) COVID-19 Race and Ethnicity Data, , Last updated on 10 March 2021, Accessed on 17 March 2021.

Source: PubMed

Sponsorit ja yhteistyökumppanit

Sairaudet

Huumeiden interventiot

3
Tilaa