So different, yet so similar: Meta-analysis and policy modeling of willingness to participate in clinical trials among Brazilians and Indians

PLoS ONE

Volumn 5, Issue 12, 2010, Pages

  Zammar, Guilherme ^a,b   Meister, Henrique ^a,b   Shah, Jatin ^b,c   Phadtare, Amruta ^b,d   Cofiel, Luciana ^b   Pietrobon, Ricardo ^b,c,e  

^a PONTIFICAL CATHOLIC UNIVERSITY OF PARANÁ   (Brazil)

^b DUKE UNIVERSITY   (United States)

^c DUKE NUS MEDICAL SCHOOL   (Singapore)

^d Kalpavriksha Healthcare and Research   (India)

^e DUKE UNIVERSITY SCHOOL OF MEDICINE   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ALTRUISM; BRAZIL; CLINICAL RESEARCH; ETHNIC DIFFERENCE; FEAR; HEALTH BELIEF; HUMAN; INDIAN; MOTIVATION; NONBIOLOGICAL MODEL; PATIENT PARTICIPATION; POLICY; REIMBURSEMENT; REVIEW; SOCIAL BEHAVIOR; SYSTEMATIC REVIEW; VALIDATION STUDY; ACQUIRED IMMUNE DEFICIENCY SYNDROME; ADOLESCENT; ADULT; ARTICLE; CLINICAL TRIAL (TOPIC); CULTURAL FACTOR; FEMALE; HUMAN IMMUNODEFICIENCY VIRUS INFECTION; INDIA; MALE; META ANALYSIS; MIDDLE AGED; PATIENT SELECTION;

ACQUIRED IMMUNODEFICIENCY SYNDROME; ADOLESCENT; ADULT; ALTRUISM; BRAZIL; CLINICAL TRIALS AS TOPIC; CULTURAL CHARACTERISTICS; FEMALE; HIV INFECTIONS; HUMANS; INDIA; MALE; MIDDLE AGED; MOTIVATION; PATIENT PARTICIPATION; PATIENT SELECTION;

EID: 78650725413     PISSN: None     EISSN: 19326203     Source Type: Journal    
DOI: 10.1371/journal.pone.0014368     Document Type: Review

References (50)

1. Costenbader KH, Brome D, Blanch D, Gall V, Karlson E, et al. (2007) Factors determining participation in prevention trials among systemic lupus erythematosus patients: a qualitative study. Arthritis and Rheumatism 57: 49-55.
2. Rojavin MA, Downs P, Shetzline MA, Chilingerian R, Cohard-Radice M (2006) Factors motivating dyspepsia patients to enter clinical research. Contemporary Clinical Trials 27: 103-111.
3. Lee SJ, Lenert L, Weisman S, Kavanaugh A (2005) Factors affecting rheumatoid arthritis patients' decisions to participate in clinical trials. The Journal of Rheumatology 32: 2317-2325.
4. Halpern SD, Karlawish JHT, Casarett D, Berlin JA, Townsend RR, et al. (2003) Hypertensive patients' willingness to participate in placebo-controlled trials: implications for recruitment efficiency. American Heart Journal 146: 985-992.
5. Nyamathi A, Koniak-Griffin D, Tallen L, González-Figueroa E, Levson L, et al. (2004) Use of community-based participatory research in preparing low income and homeless minority populations for future HIV vaccines. Journal of Interprofessional Care 18: 369-380.
6. Moreira ED, de Oliveira BG, Neves RCS, Costa S, Karic G, et al. (2006) Assessment of knowledge and attitudes of young uninsured women toward human papillomavirus vaccination and clinical trials. Journal of Pediatric and Adolescent Gynecology 19: 81-87.
7. Carneiro M, de Figueiredo Antunes CM, Greco M, Oliveira E, Andrade J, et al. (2000) Design, implementation, and evaluation at entry of a prospective cohort study of homosexual and bisexual HIV-1-negative men in Belo Horizonte, Brazil: Project Horizonte. Journal of Acquired Immune Deficiency Syndromes (1999) 25: 182-187.
8. Lacativa PGS, Szrajbman M, da Silva DASM, Melazzi ACC, de Gregório LH, et al. (2008) [Profile of clinical research subjects in an independent outpatient center]. Ciência & Saúde Coletiva 13: 1023-1032.
9. Périssé AR, Schechter M, Moreira RI, do Lago RF, Santoro-Lopes G, et al. (2000) Willingness to participate in HIV vaccine trials among men who have sex with men in Rio de Janeiro, Brazil. Projeto Prac ̧a Onze Study Group. Journal of Acquired Immune Deficiency Syndromes (1999) 25: 459-463.
10. Vieira de Souza CT, Lowndes CM, Landman Szwarcwald C, Sutmoumlller F, Bastos FI (2003) Willingness to participate in HIV vaccine trials among a sample of men who have sex with men, with and without a history of commercial sex, Rio de Janeiro, Brazil. AIDS Care 15: 539-548.
11. Shah JY, Phadtare A, Rajgor D, Vaghasia M, Pradhan S, et al. What Leads Indians to Participate in Clinical Trials? A Meta-Analysis of Qualitative Studies. PLoS ONE 5: e10730-e10730.
12. Merriam-Webster's Online Dictionary Available: http://www.merriam-webster. com/dictionary/altruism. Accessed 7 June 2010.
13. DominicWilson, RoopaPurushottam (2003) DreamingWith BRICs: The Path to 2050 Global Economics, Paper no.99. Available at: http://www2.goldmansachs. com/ideas/brics/book/99-dreaming.pdf.
14. Hoel AW, Kayssi A, Brahmanandam S, Belkin M, Conte MS, et al. (2009) Under-representation of women and ethnic minorities in vascular surgery randomized controlled trials. Journal of Vascular Surgery: Official Publication, the Society for Vascular Surgery [and] International Society for Cardiovascular Surgery, North American Chapter 50: 349-354.
15. Bartlett C, Doyal L, Ebrahim S, Davey P, Bachmann M, et al. (2005) The causes and effects of socio-demographic exclusions from clinical trials. Health Technology Assessment (Winchester, England) 9: iii-iv, ix-x, 1-152-iii-iv, ix-x, 151-152.
16. Rochon PA, Mashari A, Cohen A, Misra A, Laxer D, et al. (2004) The inclusion of minority groups in clinical trials: problems of under representation and under reporting of data. Accountability in Research 11: 215-223.
17. Colfax G, Buchbinder S, Vamshidar G, Celum C, McKirnan D, et al. (2005) Motivations for participating in an HIV vaccine efficacy trial. Journal of Acquired Immune Deficiency Syndromes (1999) 39: 359-364.
18. Campbell HM, Raisch DW, Sather MR, Warren SR, Segal AR (2007) A comparison of veteran and nonveteran motivations and reasons for participating in clinical trials. Military Medicine 172: 27-30.
19. Mattson ME, Curb JD, McArdle R (1985) Participation in a clinical trial: the patients' point of view. Controlled Clinical Trials 6: 156-167.
20. Harro CD, Judson FN, Gorse GJ, Mayer KH, Kostman JR, et al. (2004) Recruitment and baseline epidemiologic profile of participants in the first phase 3 HIV vaccine efficacy trial. Journal of Acquired Immune Deficiency Syndromes (1999) 37: 1385-1392.
21. Martinson BC, Lazovich D, Lando HA, Perry CL, McGovern PG, et al. (2000) Effectiveness of monetary incentives for recruiting adolescents to an intervention trial to reduce smoking. Preventive Medicine 31: 706-713.
22. Bentley JP, Thacker PG (2004) The influence of risk and monetary payment on the research participation decision making process. Journal of Medical Ethics 30: 293-298.
23. Seal KH, Kral AH, Lorvick J, McNees A, Gee L, et al. (2003) A randomized controlled trial of monetary incentives vs. outreach to enhance adherence to the hepatitis B vaccine series among injection drug users. Drug and Alcohol Dependence 71: 127-131.
24. Halpern SD, Karlawish JHT, Casarett D, Berlin JA, Asch DA (2004) Empirical Assessment of Whether Moderate Payments Are Undue or Unjust Inducements for Participation in Clinical Trials. Arch Intern Med 164: 801-803.
25. Golub E, Purvis L, Sapun M, Safaeian M, Beyrer C, et al. (2005) Changes in Willingness to Participate in HIV Vaccine Trials Among HIV-Negative Injection Drug Users. AIDS and Behavior 9: 301-309.
26. Sahay S, Mehendale S, Sane S, Brahme R, Brown A, et al. (2005) Correlates of HIV vaccine trial participation: an Indian perspective. Vaccine 23: 1351-1358.
27. Hays RB, Kegeles SM (1999) Factors related to the willingness of young gay men to participate in preventive HIV vaccine trials. Journal of Acquired Immune Deficiency Syndromes and Human Retrovirology: Official Publication of the International Retrovirology Association 20: 164-171.
28. Jenkins RA, Torugsa K, Markowitz LE, Mason CJ, Jamroentana V, et al. (2000) Willingness to participate in HIV-1 vaccine trials among young Thai men. Sexually Transmitted Infections 76: 386-392.
29. Brooks RA, Newman PA, Duan N, Ortiz DJ (2007) HIV vaccine trial preparedness among Spanish-speaking Latinos in the US. AIDS Care 19: 52-58.
30. Robinson SB, Ashley M, Haynes MA (1996) Attitudes of African-Americans regarding prostate cancer clinical trials. Journal of Community Health 21: 77-87.
31. Dunn LB, Kim DS, Fellows IE, Palmer BW (2009) Worth the Risk? Relationship of Incentives to Risk and Benefit Perceptions and Willingness to Participate in Schizophrenia Research. Schizophr Bull 35: 730-737.
32. Candilis PJ, Geppert CMA, Fletcher KE, Lidz CW, Appelbaum PS (2006) Willingness of subjects with thought disorder to participate in research. Schizophrenia Bulletin 32: 159-165.
33. Grady C (2005) Payment of clinical research subjects. Journal of Clinical Investigation 115: 1681-1687.
34. Westhoff CL, Heartwell S, Edwards S, Zieman M, Stuart G, et al. (2007) Oral contraceptive discontinuation: do side effects matter? American Journal of Obstetrics and Gynecology 196: 412.e1-412.e7.
35. Wolfe F, Michaud K (2007) Resistance of rheumatoid arthritis patients to changing therapy: discordance between disease activity and patients' treatment choices. Arthritis and Rheumatism 56: 2135-2142.
36. Rossini M, Bianchi G, Di Munno O, Giannini S, Minisola S, et al. (2006) Determinants of adherence to osteoporosis treatment in clinical practice. Osteoporosis International 17: 914-921.
37. Chor JSY, Ngai KLK, Goggins WB, Wong MCS, Wong SYS, et al. (2009) Willingness of Hong Kong healthcare workers to accept pre-pandemic influenza vaccination at different WHO alert levels: two questionnaire surveys. BMJ 339: b3391-b3391.
38. Madhivanan P, Krupp K, Yashodha MN, Marlow L, Klausner JD, et al. (2009) Attitudes toward HPV vaccination among parents of adolescent girls in Mysore, India. Vaccine 27: 5203-5208.
39. McGrath JW, George K, Svilar G, Ihler E, Mafigiri D, et al. (2001) Knowledge about vaccine trials and willingness to participate in an HIV/AIDS vaccine study in the Ugandan military. Journal of Acquired Immune Deficiency Syndromes (1999) 27: 381-388.
40. Bevan EG, Chee LC, McGhee SM, McInnes GT (1993) Patients' attitudes to participation in clinical trials. British Journal of Clinical Pharmacology 35: 204-207.
41. Nguyen TT, Somkin CP, Ma Y, Fung L-C, Nguyen T (2005) Participation of Asian-American Women in Cancer Treatment Research: A Pilot Study. Journal of the National Cancer Institute Monographs. pp 102-105.
42. SUS official website Available: http://portal.saude.gov.br/portal/saude/ cidadao/default.cfm. Accessed 7 June 2010.
43. Sterman J (2006) Business Dynamics: McGraw-Hill College.
44. Whitesides GM, Ismagilov RF (1999) Complexity in Chemistry. Science 284: 89-92.
45. Hirsch G, Homer J, Evans E, Zielinski A (2010) A system dynamics model for planning cardiovascular disease interventions. American Journal of Public Health 100: 616-622.
46. Fasth T, Ihlar M, Brouwers L (2010) VirSim - a model to support pandemic policy making. PLoS Currents 2.
47. Sleimen-Malkoun R, Temprado J-J, Berton E (2010) A dynamic systems approach to bimanual coordination in stroke: implications for rehabilitation and research. Medicina (Kaunas, Lithuania) 46: 374-381.
48. Vensim DSS 5.9c for Windows. Available: www.vensim.com. Accessed 7 June 2010.
49. http://www.ventanasystems.com/.
50. Wolstenhome EF (2003) Towards the definition and use of a core set of archetypal structures in system dynamics. Syst Dyn Rev 19. pp 7-26.