Barriers and motivations to volunteers’ participation in preventive vaccine trials: a systematic review

References

• Duclos P, Okwo-Bele J-M, Gacic-Dobo M, et al. Global immunization: status, progress, challenges and future. BMC Int Health Hum Rights. 2009;9(Suppl 1):S2.
   PubMed Web of Science ®Google Scholar
• Ritvo P, Irvine J, Klar N, et al. A Canadian national survey of attitudes and knowledge regarding preventive vaccines. J Immune Based Ther Vaccines. 2003;1(1):3.
   PubMedGoogle Scholar
• Bazin H. History of vaccine refusal. Bull Acad Natl Med. 2010;194(4–5):705–718.
   PubMed Web of Science ®Google Scholar
• Balinska M-A, Léon C. Attitudes towards immunization. Rev Med Interne. 2007;28(1):28–32.
   PubMed Web of Science ®Google Scholar
• Wakefield AJ. MMR vaccination and autism. Lancet. 1999;354(9182):949–950.
   PubMed Web of Science ®Google Scholar
• Maisonneuve H, Floret D. Wakefield’s affair: 12 years of uncertainty whereas no link between autism and MMR vaccine has been proved. Presse Med. 2012;41(9 Pt 1):827–834.
   PubMed Web of Science ®Google Scholar
• Yaqub O, Castle-Clarke S, Sevdalis N, et al. Attitudes to vaccination: a critical review. Soc Sci Med. 2014;112:1–11.
   PubMed Web of Science ®Google Scholar
• Peretti-Watel P, Verger P, Raude J, et al. Dramatic change in public attitudes towards vaccination during the 2009 influenza A(H1N1) pandemic in France. Euro Surveill. 2013;18:44.
   Google Scholar
• Kata A. A postmodern Pandora’s box: anti-vaccination misinformation on the Internet. Vaccine. 2010;28(7):1709–1716.
   PubMed Web of Science ®Google Scholar
• Poland GA, Jacobson RM. Understanding those who do not understand: a brief review of the anti-vaccine movement. Vaccine. 2001;19(17–19):2440–2445.
   PubMed Web of Science ®Google Scholar
• General Assembly of the World Medical Association. World medical association declaration of Helsinki: ethical principles for medical research involving human subjects. J Am Coll Dent. 2014;81(3):14–18.
   PubMedGoogle Scholar
• CDC - NCHHSTP - Tuskegee Study - Timeline [Internet]. Available from: http://www.cdc.gov/tuskegee/timeline.htm.
   Google Scholar
• Cobb EM, Singer DC, Davis MM. Public interest in medical research participation: differences by volunteer status and study type. Clin Transl Sci. 2014;7(2):145–149.
   PubMed Web of Science ®Google Scholar
• Almeida L, Azevedo B, Nunes T, et al. Why healthy subjects volunteer for phase I studies and how they perceive their participation? Eur. J Clin Pharmacol. 2007;63(11):1085–1094.
   PubMed Web of Science ®Google Scholar
• Tramm R, Daws K, Schadewaldt V. Clinical trial recruitment–a complex intervention? J Clin Nurs. 2013;22(17–18):2436–2443.
   PubMed Web of Science ®Google Scholar
• Newman PA, Logie CH, Doukas N, et al. HPV vaccine acceptability among men: a systematic review and meta-analysis. Sex Transm Infect. 2013;89(7):568–574.
   PubMed Web of Science ®Google Scholar
• Buchbinder SP, Metch B, Holte SE, et al. Determinants of enrollment in a preventive HIV vaccine trial: hypothetical versus actual willingness and barriers to participation. J Acquir Immune Defic Syndr. 2004;36(1):604–612.
   PubMed Web of Science ®Google Scholar
• Moher D, Liberati A, Tetzlaff J, et al. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med. Internet 2009; 67. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2707599/
   Web of Science ®Google Scholar
• Dhalla S, Poole G. Barriers of enrolment in HIV vaccine trials: a review of HIV vaccine preparedness studies. Vaccine. 2011;29(35):5850–5859.
   PubMed Web of Science ®Google Scholar
• Dhalla S, Poole G. Motivators to participation in actual HIV vaccine trials. AIDS Behav. 2014;18(2):263–277.
   PubMed Web of Science ®Google Scholar
• Hurley-Rosenblatt A, Dorsen C. Barriers to volunteer enrollment in HIV preventive vaccine clinical research trials: a review of the literature. Association of Nurses in AIDS Care. 2011;22(4):330–334.
   PubMed Web of Science ®Google Scholar
• Tarimo EAM, Bakari M, Kakoko DCV, et al. Motivations to participate in a Phase I/II HIV vaccine trial: a descriptive study from Dar es Salaam, Tanzania. BMC Public Health [Internet]. 2016; 16. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4765221/
   PubMed Web of Science ®Google Scholar
• Yoon R, Mooney J, Broder G, et al. Exploring barriers and facilitators to participation of male-to-female transgender persons in preventive HIV vaccine clinical trials. Prev Sci. 2014;15(3):268–276.
   PubMed Web of Science ®Google Scholar
• Chakrapani V, Newman PA, Singhal N, et al. Willingness to participate in HIV vaccine trials among men who have sex with men in Chennai and Mumbai, India: a social ecological approach. PLoS ONE. 2012;7(12):e51080.
   PubMed Web of Science ®Google Scholar
• Gudmundsdóttir T, Tryggvadóttir L, Allende M, et al. Eligibility and willingness of young Icelandic women to participate in a HPV vaccination trial. Acta Obstet Gynecol Scand. 2003;82(4):345–350.
   PubMed Web of Science ®Google Scholar
• Hoover DR, Carfioli B, Moench EA. Attitudes of adolescent/young adult women toward human papillomavirus vaccination and clinical trials. Health Care Women Int. 2000;21(5):375–391.
   PubMedGoogle Scholar
• Park JN, White B, Bates A, et al. Motivators and barriers influencing willingness to participate in candidate HCV vaccine trials: perspectives of people who inject drugs. Drug Alcohol Depend. 2012;123(1–3):35–40.
   PubMed Web of Science ®Google Scholar
• Treloar C, Byron P, McCann P, et al. Fitness for duty”: social, organisational and structural influences on the design and conduct of candidate hepatitis C vaccine trials involving people who inject drugs. Vaccine. 2010;28(32):5228–5236.
   PubMed Web of Science ®Google Scholar
• Levy V, Evans JL, Stein ES, et al. Are young injection drug users ready and willing to participate in preventive HCV vaccine trials? Vaccine. 2010;28(37):5947–5951.
   PubMed Web of Science ®Google Scholar
• Maher L, White B, Donald A, et al. Using ethnographic fieldwork to inform hepatitis C vaccine preparedness studies with people who inject drugs. Int J Drug Policy. 2010;21(3):194–201.
   PubMed Web of Science ®Google Scholar
• Costas L, Bayas JM, Serrano B, et al. Motivations for participating in a clinical trial on an avian influenza vaccine. Trials. 2012;13:28.
   PubMed Web of Science ®Google Scholar
• Kiberd M, Cooper C, Slaunwhite J, et al. Pandemic influenza is a strong motivator for participation in vaccine clinical trials among HIV-positive Canadian adults. Can J Infect Dis Med Microbiol. 2009;20(4):e124–129.
   PubMedGoogle Scholar
• Allsup SJ, Gosney MA. Difficulties of recruitment for a randomized controlled trial involving influenza vaccination in healthy older people. Gerontology. 2002;48(3):170–173.
   PubMed Web of Science ®Google Scholar
• Pérez-Guerra CL, Rodríguez-Acosta RL, Soto-Gómez E, et al. Assessing the interest to participate in a dengue vaccine efficacy trial among residents of Puerto Rico. Hum Vaccin Immunother. 2012;8(7):905–915.
   PubMed Web of Science ®Google Scholar
• Ross S, Grant A, Counsell C, et al. Barriers to participation in randomised controlled trials: a systematic review. J Clin Epidemiol. 1999;52(12):1143–1156.
   PubMed Web of Science ®Google Scholar
• Hollada J, Marfori W, Tognolini A, et al. Successful patient recruitment in CT imaging clinical trials: what factors influence patient participation? Acad Radiol. 2014;21(1):52–57.
   PubMed Web of Science ®Google Scholar
• Lamunu D, Chapman KN, Nsubuga P, et al. Reasons for non-participation in an international multicenter trial of a new drug for tuberculosis treatment. Int J Tuberc Lung Dis. 2012;16(4):480–485.
   PubMed Web of Science ®Google Scholar
• Mostafa A, N’Dow J, Abdel-Fattah M. Factors influencing women’s decision to participate or not in a surgical randomised controlled trial for surgical treatment of female stress urinary incontinence. Biomed Res Int. 2013;2013:139813.
   PubMed Web of Science ®Google Scholar
• Mills EJ, Seely D, Rachlis B, et al. Barriers to participation in clinical trials of cancer: a meta-analysis and systematic review of patient-reported factors. Lancet Oncol. 2006;7(2):141–148.
   PubMed Web of Science ®Google Scholar
• Stunkel L, Grady C. More than the money: a review of the literature examining healthy volunteer motivations. Contemp Clin Trials. 2011;32(3):342–352.
   PubMed Web of Science ®Google Scholar
• Sojka BN, Sojka P. The blood donation experience: self-reported motives and obstacles for donating blood. Vox Sanguinis. 2008;94(1):56–63.
   PubMed Web of Science ®Google Scholar
• Grady C, Dickert N, Jawetz T, et al. An analysis of U.S. practices of paying research participants. Contemp Clin Trials. 2005;26(3):365–375.
   PubMed Web of Science ®Google Scholar
• Huo X, Shi G, Li X, et al. Knowledge and attitudes about Ebola vaccine among the general population in Sierra Leone. Vaccine. 2016;34(15):1767–1772.
   PubMed Web of Science ®Google Scholar
• Chu SH, Jeong SH, Kim EJ, et al. The views of patients and healthy volunteers on participation in clinical trials: an exploratory survey study. Contemp Clin Trials. 2012;33(4):611–619.
   PubMed Web of Science ®Google Scholar
• Shavers VL, Lynch CF, Burmeister LF. Knowledge of the Tuskegee study and its impact on the willingness to participate in medical research studies. J Natl Med Assoc. 2000;92(12):563–572.
   PubMed Web of Science ®Google Scholar
• Newman PA, Logie C, James L, et al. Speaking the Dialect: understanding public discourse in the aftermath of an HIV vaccine trial shutdown. Am J Public Health. 2011;101(9):1749–1758.
   PubMed Web of Science ®Google Scholar
• Dong Y, Shen X, Guo R, et al. Willingness to participate in HIV therapeutic vaccine trials among HIV-infected patients on ART in China. PLoS ONE. 2014;9(11):e111321.
   PubMed Web of Science ®Google Scholar
• Young AM, Stephens DB, Khaleel HA, et al. Hepatitis C vaccine clinical trials among people who use drugs: potential for participation and involvement in recruitment. Contemp Clin Trials. 2015;41:9–16.
   PubMed Web of Science ®Google Scholar
• Ridda I, MacIntyre CR, Lindley RI, et al. Difficulties in recruiting older people in clinical trials: an examination of barriers and solutions. Vaccine. 2010;28(4):901–906.
   PubMed Web of Science ®Google Scholar
• Benkimoun P. Essai clinique mortel de Rennes : un rapport pointe le manque d’information des volontaires [Internet]. Le Monde.Fr. 2016. Available from: http://www.lemonde.fr/medecine/article/2016/05/22/essai-clinique-mortel-de-rennes-un-rapport-pointe-le-manque-d-information-des-volontaires_4924184_1650718.html
   Google Scholar
• Cameron MP, Newman PA, Roungprakhon S, et al. The marginal willingness-to-pay for attributes of a hypothetical HIV vaccine. Vaccine. 2013;31(36):3712–3717.
   PubMed Web of Science ®Google Scholar
• Rubincam C, Lacombe-Duncan A, Newman PA. Taking culture seriously in biomedical HIV prevention trials: a meta-synthesis of qualitative studies. Expert Rev Vaccines. 2016;15(3):331–347.
   PubMed Web of Science ®Google Scholar
• Bidad N, MacDonald L, Winters ZE, et al. How informed is declared altruism in clinical trials? A qualitative interview study of patient decision-making about the QUEST trials (quality of life after mastectomy and breast reconstruction). Trials. 2016;17(1):431.
   PubMed Web of Science ®Google Scholar
• Rautenbach C, Lindegger G, Slack C, et al. I’m positive, but I’m negative: competing voices in informed consent and implications for HIV vaccine trials. J Empir Res Hum Res Ethics. 2015;10(2):151–156.
   PubMed Web of Science ®Google Scholar
• South A, Hanley B, Gafos M, et al. Models and impact of patient and public involvement in studies carried out by the Medical Research Council Clinical Trials Unit at University College London: findings from ten case studies. Trials. 2016;17:376.
   PubMed Web of Science ®Google Scholar
• Tait AR, Voepel-Lewis T. Digital multimedia: a new approach for informed consent? JAMA. 2015;313(5):463–464.
   PubMed Web of Science ®Google Scholar
• Stacey D, Légaré F, Col NF, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2014;(1):CD001431. doi:10.1002/14651858.
   PubMed Web of Science ®Google Scholar
• Gillies K, Cotton SC, Brehaut JC, et al. Decision aids for people considering taking part in clinical trials. Cochrane Database Syst Rev. 2015;11:CD009736.
   Google Scholar
• Juraskova I, Butow P, Bonner C, et al. Improving decision making about clinical trial participation - a randomised controlled trial of a decision aid for women considering participation in the IBIS-II breast cancer prevention trial. Br J Cancer. 2014;111(1):1–7.
   PubMed Web of Science ®Google Scholar
• Larson HJ, de Figueiredo A, Xiahong Z, et al. The state of vaccine confidence 2016: global insights through a 67-country survey. EBioMedicine. 2016;12:295–301.
   PubMed Web of Science ®Google Scholar
• Ferriman A. Decline in altruism threatens blood supplies. BMJ. 1998;317(7170):1405.
   Google Scholar
• Bambrick H, Gallego G. Community attitudes to remunerated blood donation in Australia: results from a national telephone survey. Transfus Med. 2013;23(5):302–308.
   PubMed Web of Science ®Google Scholar
• Abolghasemi H, Hosseini-Divkalayi NS, Seighali F. Blood donor incentives: a step forward or backward. Asian J Transfus Sci. 2010;4(1):9–13.
   PubMedGoogle Scholar
• Treweek S, Lockhart P, Pitkethly M, et al. Methods to improve recruitment to randomised controlled trials: cochrane systematic review and meta-analysis. BMJ Open. 2013;3:2.
   Web of Science ®Google Scholar