Health Promoters and Organ Donation

Organ Donation Clinical Trial

— PdD  

Official title:

Promotoras de Donación: Leveraging Community Health Workers to Increase Donor Registration of Older Hispanics

Clinical Trial Details — Status: Completed

Administrative data

• NCT number: NCT04007419
• Other study ID #: R39OT29878
• Status: Completed
• Phase: N/A
• Start date: September 1, 2016
• Est. completion date: April 27, 2020

Study information

• Verified date: April 2020
• Source: Temple University
• Contact: n/a
• Is FDA regulated: No
• Study type: Interventional

Clinical Trial Summary

Older Hispanics (age 50+ years) are disproportionately overrepresented on the transplant waitlist, but underrepresented as deceased donors and transplant recipients. This application proposes the formative research to design and empirically test an eLearning module, Promotoras de Donación, to train community health workers (i.e., Promotoras), who already provide culturally and linguistically sensitive services to their communities, to discuss and promote organ donation with older Hispanic women in 3 geographically distinct communities across the U.S. The proposed intervention leverages the established and evidence-based Promotoras program to increase rates of donor designation within Hispanic communities across the U.S. and reduce disparities in access to transplantation for this population.

Description:

Despite consistently positive attitudes toward organ donation, increasing the number of registered organ donors in the US continues to challenge the professional and research communities. Improving rates of donor designation among ethnic minorities is of particular importance given the need to match donated organs to recipients on blood type and human leukocyte antigens - the best matches are found when the donor and recipient are of the same ethnic background. In Hispanic communities, lay health educators (i.e., Promotoras) are trained to promote behaviors that empower and enable constituents to prevent disease, and increase control over and improve their health. In partnership with leadership of four Promotoras organizations in geographically diverse areas of the U.S. (PA, IL, TX) representing the largest subgroups of the Hispanic population, this pilot study proposes to leverage the preexisting network of lay health educators to advocate for organ donation and promote donor registration (first person consent) among female Hispanics over the age of 50. Specifically, this study will collect the formative data needed to design an educational and behavioral communication eLearning module for Promotoras and test the impact of the training on Promotoras' knowledge of organ donation, confidence discussing and promoting donor registration, and efficacy increasing rates of donor registration among mature and older Hispanic women. Focus group interviews with Hispanic women and Promotoras will identify the information needs and concerns about organ donation registration of these two groups; interviews with lay educators will also gauge interactivity preferences as well as content and design issues for the resulting web-based training (Aim 1). These data will be used to develop an eLearning module to educate Promotoras about organ donation and train them to discuss donation and promote donor registration (Aim 2). A brief quantitative survey will assess the impact of the module on knowledge of organ donation and confidence (communication self-efficacy) discussing donation and promoting donor designation. We will evaluate Promotoras' efficacy promoting organ donation by assessing the number of Hispanic women age 50 and over who register as posthumous organ donors as a proportion of all women attending small group sessions led by trained Promotoras (Aim 3). If effective, the eLearning module could easily be disseminated nationally to train Promotoras to discuss and promote organ donation. Ultimately, this 'train-the-trainer' study has the potential to increase rates of donor registration among Hispanic communities in the U.S. and help to reduce disparities in access to transplantation for this population.

Recruitment information / eligibility

• Status: Completed
• Enrollment: 621
• Est. completion date: April 27, 2020
• Est. primary completion date: April 27, 2020
• Accepts healthy volunteers: Accepts Healthy Volunteers
• Gender: All
• Age group: 18 Years to 80 Years

Eligibility

Inclusion Criteria:

• Lay health educators (Promotora): Lay health educators must be at least 18 years of age, have completed all required Promotoras training, and have actively worked with the local Hispanic community within 3 months of recruitment.

• Mature Latina: Eligible women must be at least 50 years of age, with no obvious cognitive impairment.

Exclusion Criteria:

• Lay health educators (Promotora): Untrained lay health educators or those currently in training at their respective organizations will be deemed ineligible, as will individuals who are not actively working as a Promotora at the time of recruitment/enrollment.

• Mature Latina: Hispanic women under the age of 50, or those with obvious cognitive impairment will be deemed ineligible.

Related Conditions & MeSH terms

• Donor Designation/Registration
• Organ Donation

Intervention

Behavioral:
• Health Promoters and Organ Donation
Promotoras de Donación is a highly engaging and interactive online learning experience, that accommodates multiple learning styles by incorporating a variety of pedagogic approaches. The module consists of two components: a didactic educational component and a skills-based communication component. The didactic component provides basic information about organ donation and transplantation and the need for donors in the Hispanic community, and addresses concerns about donation commonly held by older Latina. The skills-based component provides instruction on the key communication skills needed to effectively engage small groups in discussions about organ donation. This component is intended to build communication self-efficacy or confidence opening the discussion about donation, addressing concerns raised by mature and older women participating in the small group sessions, and promoting the act of donor registration using persuasive, but non-coercive language.

Locations

Country	Name	City	State
United States	Temple University	Philadelphia	Pennsylvania

Sponsors (1)

Lead Sponsor	Collaborator
Temple University

Country where clinical trial is conducted

United States, 

References & Publications (89)

Ahmed A, Keeffe EB. Current indications and contraindications for liver transplantation. Clin Liver Dis. 2007 May;11(2):227-47. Review. — View Citation

Alvaro EM, Jones SP, Robles AS, Siegel JT. Predictors of organ donation behavior among Hispanic Americans. Prog Transplant. 2005 Jun;15(2):149-56. — View Citation

Anker AE, Feeley TH, Kim H. Examining the attitude-behavior relationship in prosocial donation domains. J Appl Soc Psychol. 2010;40:1293-1324.

Anker AE, Feeley TH. Are nonparticipants in prosocial behavior merely innocent bystanders? Health Commun. 2011 Jan;26(1):13-24. doi: 10.1080/10410236.2011.527618. — View Citation

Asbury J-E. Overview of focus group research. Qual Health Res. 1995;5(4):414-20.

Ayala GX, Vaz L, Earp JA, Elder JP, Cherrington A. Outcome effectiveness of the lay health advisor model among Latinos in the United States: an examination by role. Health Educ Res. 2010 Oct;25(5):815-40. doi: 10.1093/her/cyq035. Epub 2010 Jul 5. Review. — View Citation

Balcázar H, Alvarado M, Cantu F, Pedregon V, Fulwood R. A promotora de salud model for addressing cardiovascular disease risk factors in the US-Mexico border region. Prev Chronic Dis. 2009 Jan;6(1):A02. Epub 2008 Dec 15. — View Citation

Baru JS, Lucas BR, Martinez C, Brauner D. Organ donation among undocumented hispanic immigrants: an assessment of knowledge and attitudes. J Clin Ethics. 2013 Winter;24(4):364-72. — View Citation

Berg BL. Qualitative research methods for the social sciences, 6th ed. Boston, MA: Allyn & Bacon; 2007.

Breitkopf CR. Attitudes, beliefs and behaviors surrounding organ donation among Hispanic women. Curr Opin Organ Transplant. 2009 Apr;14(2):191-5. Review. — View Citation

Brown CV, Foulkrod KH, Dworaczyk S, Thompson K, Elliot E, Cooper H, Coopwood B. Barriers to obtaining family consent for potential organ donors. J Trauma. 2010 Feb;68(2):447-51. doi: 10.1097/TA.0b013e3181caab8f. — View Citation

Byrd TL, Wilson KM, Smith JL, Coronado G, Vernon SW, Fernandez-Esquer ME, Thompson B, Ortiz M, Lairson D, Fernandez ME. AMIGAS: a multicity, multicomponent cervical cancer prevention trial among Mexican American women. Cancer. 2013 Apr 1;119(7):1365-72. doi: 10.1002/cncr.27926. Epub 2012 Dec 21. — View Citation

Carrion AF, Ghanta R, Carrasquillo O, Martin P. Chronic liver disease in the Hispanic population of the United States. Clin Gastroenterol Hepatol. 2011 Oct;9(10):834-41; quiz e109-10. doi: 10.1016/j.cgh.2011.04.027. Epub 2011 May 12. Review. — View Citation

Christmas AB, Mallico EJ, Burris GW, Bogart TA, Norton HJ, Sing RF. A paradigm shift in the approach to families for organ donation: honoring patients' wishes versus request for permission in patients with Department of Motor Vehicles donor designations. J Trauma. 2008 Dec;65(6):1507-9; discussion 1509-10. doi: 10.1097/TA.0b013e31818a5cf0. — View Citation

Colby SL, Ortman JM. Projections of the size and composition of the U.S. population: 2014 to 2060. Population Estimates and Projections. Current Population Reports. U.S. Census Bureau; 2015.

Crano WD, Prislin R. Components of vested interest and attitude-behavior consistency. Bas Appl Soc Psychol. 1995;17:1-21. doi:10.1080/01973533.1995.9646129.

Deedat S, Kenten C, Morgan M. What are effective approaches to increasing rates of organ donor registration among ethnic minority populations: a systematic review. BMJ Open. 2013 Dec 20;3(12):e003453. doi: 10.1136/bmjopen-2013-003453. — View Citation

Dewey J. Democracy and education: An introduction to the philosophy of education. The Macmillan Company; 1916.

Dominguez K, Penman-Aguilar A, Chang MH, Moonesinghe R, Castellanos T, Rodriguez-Lainz A, Schieber R; Centers for Disease Control and Prevention (CDC). Vital signs: leading causes of death, prevalence of diseases and risk factors, and use of health services among Hispanics in the United States - 2009-2013. MMWR Morb Mortal Wkly Rep. 2015 May 8;64(17):469-78. Erratum in: MMWR Morb Mortal Wkly Rep. 2015 Oct 16;64(40):1153. — View Citation

Downing K, Jones LL. Designing an educational strategy for increasing organ donor registration among older adults. Prog Transplant. 2008 Dec;18(4):290-6. — View Citation

Eggers PW. Has the incidence of end-stage renal disease in the USA and other countries stabilized? Curr Opin Nephrol Hypertens. 2011 May;20(3):241-5. doi: 10.1097/MNH.0b013e3283454319. — View Citation

Fernández ME, Gonzales A, Tortolero-Luna G, Williams J, Saavedra-Embesi M, Chan W, Vernon SW. Effectiveness of Cultivando la Salud: a breast and cervical cancer screening promotion program for low-income Hispanic women. Am J Public Health. 2009 May;99(5):936-43. doi: 10.2105/AJPH.2008.136713. Epub 2009 Mar 19. — View Citation

Frates J, Garcia Bohrer G. Hispanic perceptions of organ donation. Prog Transplant. 2002 Sep;12(3):169-75. — View Citation

Friedman LM, Furberg CD, DeMets DL. Fundamentals of Clinical Trials, 4th ed. New York, NY: Springer; 2010.

Gallup Organization. The American public's attitudes toward organ donation and transplantation. Boston: The Partnership for Organ Donation; 1993.

Gordon EJ, Feinglass J, Carney P, Ramirez D, Olivero M, O'Connor K, MacLean J, Brucker J, Caicedo JC. An interactive, bilingual, culturally targeted website about living kidney donation and transplantation for hispanics: development and formative evaluation. JMIR Res Protoc. 2015 Apr 20;4(2):e42. doi: 10.2196/resprot.3838. — View Citation

Gordon EJ, Feinglass J, Carney P, Vera K, Olivero M, Black A, O'Connor K, MacLean J, Nichols S, Sageshima J, Preczewski L, Caicedo JC. A Culturally Targeted Website for Hispanics/Latinos About Living Kidney Donation and Transplantation: A Randomized Controlled Trial of Increased Knowledge. Transplantation. 2016 May;100(5):1149-60. doi: 10.1097/TP.0000000000000932. — View Citation

Grams ME, Chow EK, Segev DL, Coresh J. Lifetime incidence of CKD stages 3-5 in the United States. Am J Kidney Dis. 2013 Aug;62(2):245-52. doi: 10.1053/j.ajkd.2013.03.009. Epub 2013 Apr 6. — View Citation

Greif R, Becker CB, Hildebrandt T. Reducing eating disorder risk factors: A pilot effectiveness trial of a train-the-trainer approach to dissemination and implementation. Int J Eat Disord. 2015 Dec;48(8):1122-31. doi: 10.1002/eat.22442. Epub 2015 Aug 18. — View Citation

Hannafin MJ. Interaction Strategies and Emerging Instructional Technologies: Psychological Perspectives. Can J Educ Commun. 1989; 18(3): 167-79.

Hargie O. Handbook of communication skills. New York: Routledge; 2006.

Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009 Apr;42(2):377-81. doi: 10.1016/j.jbi.2008.08.010. Epub 2008 Sep 30. — View Citation

Hoerger TJ, Simpson SA, Yarnoff BO, Pavkov ME, Ríos Burrows N, Saydah SH, Williams DE, Zhuo X. The future burden of CKD in the United States: a simulation model for the CDC CKD Initiative. Am J Kidney Dis. 2015 Mar;65(3):403-11. doi: 10.1053/j.ajkd.2014.09.023. Epub 2014 Nov 5. — View Citation

Holmberg B. Theory and practice of distance education. London: Routledge; 1989.

Hoyert DL. 75 years of mortality in the United States, 1935-2010. NCHS Data Brief. 2012 Mar;(88):1-8. — View Citation

Hurtado S. Matrisocialidad Caracas: Edición EBUC=FACES/UCV;1998.

Johnson CM, Sharkey JR, Dean WR, St John JA, Castillo M. Promotoras as research partners to engage health disparity communities. J Acad Nutr Diet. 2013 May;113(5):638-42. doi: 10.1016/j.jand.2012.11.014. Epub 2013 Feb 1. — View Citation

Kamberelis G, Dimitriadis G. Focus groups: contingent articulations of pedagogy, politics, and inquiry. NK Denzin & YS Lincoln. The SAGE Handbook of Qualitative Research. 2011.

Kemmer N, Neff GW. Liver transplantation in the ethnic minority population: challenges and prospects. Dig Dis Sci. 2010 Apr;55(4):883-9. doi: 10.1007/s10620-009-0803-7. Epub 2009 Apr 24. Review. — View Citation

Kim HJ, Lee HW. Important predictor of mortality in patients with end-stage liver disease. Clin Mol Hepatol. 2013 Jun;19(2):105-15. doi: 10.3350/cmh.2013.19.2.105. Epub 2013 Jun 27. Review. — View Citation

Krueger RA. Focus groups: A practical guide for applied research, 2nd ed. Thousand Oaks, CA: Sage; 1994.

Lazo M, Bilal U, Perez-Escamilla R. Epidemiology of NAFLD and Type 2 Diabetes: Health Disparities Among Persons of Hispanic Origin. Curr Diab Rep. 2015 Dec;15(12):116. doi: 10.1007/s11892-015-0674-6. Review. — View Citation

Lazo M, Hernaez R, Eberhardt MS, Bonekamp S, Kamel I, Guallar E, Koteish A, Brancati FL, Clark JM. Prevalence of nonalcoholic fatty liver disease in the United States: the Third National Health and Nutrition Examination Survey, 1988-1994. Am J Epidemiol. 2013 Jul 1;178(1):38-45. doi: 10.1093/aje/kws448. Epub 2013 May 23. — View Citation

Leont'ev AN. The problem of activity in psychology. J Rus East Europ Psychol. 1974;13(2): 4-33.

Lim YS, Kim WR. The global impact of hepatic fibrosis and end-stage liver disease. Clin Liver Dis. 2008 Nov;12(4):733-46, vii. doi: 10.1016/j.cld.2008.07.007. Review. — View Citation

Lindquist R, Wyman JF, Talley KM, Findorff MJ, Gross CR. Design of control-group conditions in clinical trials of behavioral interventions. J Nurs Scholarsh. 2007;39(3):214-21. — View Citation

Lujan J, Ostwald SK, Ortiz M. Promotora diabetes intervention for Mexican Americans. Diabetes Educ. 2007 Jul-Aug;33(4):660-70. — View Citation

Marsh T, Derose KP, Rios M, Cohen D. Promotoras as data collectors in a large study of physical activity in parks. Health Promot Pract. 2015 May;16(3):354-61. doi: 10.1177/1524839914563076. Epub 2015 Feb 3. — View Citation

Mays N, Pope C. Qualitative research in health care. Assessing quality in qualitative research. BMJ. 2000 Jan 1;320(7226):50-2. Review. — View Citation

McCloskey J. Promotores as partners in a community-based diabetes intervention program targeting Hispanics. Fam Community Health. 2009 Jan-Mar;32(1):48-57. doi: 10.1097/01.FCH.0000342816.87767.e6. — View Citation

Morgan SE, Miller JK, Arasaratnam LA. Similarities and differences between African Americans' and European Americans' attitudes, knowledge, and willingness to communicate about organ donation. J Applied Soc Psychol. 2003;33:693-715. doi: 10.1111/j.1559-1816.2003.tb01920.x

Morgan SE, Miller JK. Beyond the organ donor card: the effect of knowledge, attitudes, and values on willingness to communicate about organ donation to family members. Health Commun. 2002;14(1):121-34. — View Citation

Morgan SE, Miller JK. Communicating about gifts of life: the effect of knowledge, attitudes, and altruism on behavior and behavioral intentions regarding organ donation. J Applied Commun Res. 2002; 30:163-78. doi: 10.1080/00909880216580.

Morgan SE. The power of talk: African Americans' communication with family members about organ donation and its impact on the willingness to donate. J Soc Pers Rel. 2004;21:112-24. doi: 10.1177/0265407504039845

Muramoto ML, Connolly T, Strayer LJ, Ranger-Moore J, Blatt W, Leischow R, Leischow S. Tobacco cessation skills certification in Arizona: application of a state wide, community based model for diffusion of evidence based practice guidelines. Tob Control. 2000 Dec;9(4):408-14. — View Citation

Neuendorf KA. The content analysis guidebook. Thousand Oaks, CA: Sage; 2002.

O'Hegarty M, Pederson LL, Thorne SL, Caraballo RS, Evans B, Athey L, McMichael J. Customizing survey instruments and data collection to reach Hispanic/Latino adults in border communities in Texas. Am J Public Health. 2010 Apr 1;100 Suppl 1:S159-64. doi: 10.2105/AJPH.2009.167338. Epub 2010 Feb 10. — View Citation

Orfaly RA, Frances JC, Campbell P, Whittemore B, Joly B, Koh H. Train-the-trainer as an educational model in public health preparedness. J Public Health Manag Pract. 2005 Nov;Suppl:S123-7. — View Citation

Quick BL, Anker AE, Feeley TH, Morgan SE. An examination of three theoretical models to explain the organ donation attitude--registration discrepancy among mature adults. Health Commun. 2016;31(3):265-74. doi: 10.1080/10410236.2014.947468. Epub 2015 Aug 25. — View Citation

Ray ML, Wilson MM, Wandersman A, Meyers DC, Katz J. Using a training-of-trainers approach and proactive technical assistance to bring evidence based programs to scale: an operationalization of the interactive systems framework's support system. Am J Community Psychol. 2012 Dec;50(3-4):415-27. doi: 10.1007/s10464-012-9526-6. — View Citation

Rein DB, Wittenborn JS, Weinbaum CM, Sabin M, Smith BD, Lesesne SB. Forecasting the morbidity and mortality associated with prevalent cases of pre-cirrhotic chronic hepatitis C in the United States. Dig Liver Dis. 2011 Jan;43(1):66-72. doi: 10.1016/j.dld.2010.05.006. Epub 2010 Jun 17. — View Citation

Rhodes SD, Foley KL, Zometa CS, Bloom FR. Lay health advisor interventions among Hispanics/Latinos: a qualitative systematic review. Am J Prev Med. 2007 Nov;33(5):418-27. Review. — View Citation

Robinson DH, Perryman JP, Thompson NJ, Amaral S, Arriola KR. Testing the utility of a modified organ donation model among African American adults. J Behav Med. 2012 Jun;35(3):364-74. doi: 10.1007/s10865-011-9363-3. Epub 2011 Jun 23. — View Citation

Rubak S, Mortensen L, Ringsted C, Malling B. A controlled study of the short- and long-term effects of a Train the Trainers course. Med Educ. 2008 Jul;42(7):693-702. doi: 10.1111/j.1365-2923.2008.03044.x. Epub 2008 May 23. — View Citation

Saadé M, Morales-Otero L, Davis J, Torres E, González Z, Santiago-Delpín EA. A 16-fold increase in organ donation in a Hispanic population. Transplant Proc. 2008 May;40(4):1005-7. doi: 10.1016/j.transproceed.2008.03.120. — View Citation

Salim A, Bery C, Ley EJ, Schulman D, Navarro S, Zheng L, Chan LS. A focused educational program after religious services to improve organ donation in Hispanic Americans. Clin Transplant. 2012 Nov-Dec;26(6):E634-40. doi: 10.1111/ctr.12036. Epub 2012 Oct 29. — View Citation

Salim A, Schulman D, Ley EJ, Berry C, Navarro S, Chan LS. Contributing factors for the willingness to donate organs in the Hispanic American population. Arch Surg. 2010 Jul;145(7):684-9. doi: 10.1001/archsurg.2010.110. — View Citation

Scaglione S, Kliethermes S, Cao G, Shoham D, Durazo R, Luke A, Volk ML. The Epidemiology of Cirrhosis in the United States: A Population-based Study. J Clin Gastroenterol. 2015 Sep;49(8):690-6. doi: 10.1097/MCG.0000000000000208. — View Citation

Schuppan D, Afdhal NH. Liver cirrhosis. Lancet. 2008 Mar 8;371(9615):838-51. doi: 10.1016/S0140-6736(08)60383-9. Review. — View Citation

Sharkey JR, Dean WR, St John JA, Huber JC Jr. Using direct observations on multiple occasions to measure household food availability among low-income Mexicano residents in Texas colonias. BMC Public Health. 2010 Jul 29;10:445. doi: 10.1186/1471-2458-10-445. — View Citation

Siminoff LA, Agyemang AA, Traino HM. Consent to organ donation: a review. Prog Transplant. 2013 Mar;23(1):99-104. doi: 10.7182/pit2013801. Review. — View Citation

Singal AK, Anand BS. Recent trends in the epidemiology of alcoholic liver disease. Clin Liver Dis (Hoboken). 2013 Apr 24;2(2):53-56. doi: 10.1002/cld.168. eCollection 2013 Apr. Review. — View Citation

Sivacek J, Crano WD. Vested interest as a moderator of attitude-behavior consistency. J Pers Soc Psychol. 1982;43:210-21. doi: 10.1037/0022-3514.43.2.210.

Sosa ET, Biediger-Friedman L, Yin Z. Lessons learned from training of promotores de salud for obesity and diabetes prevention. J Health Dispar Res Prac 6(1): 1, 2013.

Spitzberg BH, Cupach WR. Interpersonal communication competence. Beverly Hills, CA: Sage; 1984.

Staten LK, Cutshaw CA, Davidson C, Reinschmidt K, Stewart R, Roe DJ. Effectiveness of the Pasos Adelante chronic disease prevention and control program in a US-Mexico border community, 2005-2008. Prev Chronic Dis. 2012;9:E08. Epub 2011 Dec 15. — View Citation

Stephenson J, Imrie J. Why do we need randomised controlled trials to assess behavioural interventions? BMJ. 1998 Feb 21;316(7131):611-3. Review. — View Citation

Strauss A, Corbin J. Basics of qualitative research: grounded theory procedures and techniques. Newbury Park, CA; Sage; 1990.

Traino HM, Siminoff LA. Attitudes and acceptance of First Person Authorization: a national comparison of donor and nondonor families. J Trauma Acute Care Surg. 2013 Jan;74(1):294-300. doi: 10.1097/TA.0b013e318270dafc. — View Citation

U.S. Department of Health and Human Services, Health Resources and Services Administration, Bureau of Health Professions. Community Health Worker National Workforce Study; 2007.

U.S. Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, 2012 National Survey of Organ Donation Attitudes and Behaviors. Rockville, Maryland: U.S. Department of Health and Human Services, 2013.

U.S. Department of Health and Human Services. HHS action plan to reduce racial and ethnic health disparities: A nation free of disparities in health and health care; 2011.

U.S. Department of Health and Human Services. Report on the Division of Transplantation's Grant Program 1999-2004: Social and Behavioral Interventions to Increase Organ Donation. Institute for Campaign Research and Evaluation. 2005.

United States Renal Data System. 2015 USRDS annual data report: Epidemiology of kidney disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2015.

University of Arizona. A Summary of the National Community Health Advisor Study. Annie E. Casey Foundation. 1998.

Vaughn S, Schumm JS, Sinagub J. Focus group interviews in education and psychology. Thousand Oaks, CA: Sage; 1996.

Wong RJ, Aguilar M, Cheung R, Perumpail RB, Harrison SA, Younossi ZM, Ahmed A. Nonalcoholic steatohepatitis is the second leading etiology of liver disease among adults awaiting liver transplantation in the United States. Gastroenterology. 2015 Mar;148(3):547-55. doi: 10.1053/j.gastro.2014.11.039. Epub 2014 Nov 25. — View Citation

Yarber L, Brownson CA, Jacob RR, Baker EA, Jones E, Baumann C, Deshpande AD, Gillespie KN, Scharff DP, Brownson RC. Evaluating a train-the-trainer approach for improving capacity for evidence-based decision making in public health. BMC Health Serv Res. 2015 Dec 12;15:547. doi: 10.1186/s12913-015-1224-2. — View Citation

Yracheta JM, Alfonso J, Lanaspa MA, Roncal-Jimenez C, Johnson SB, Sánchez-Lozada LG, Johnson RJ. Hispanic Americans living in the United States and their risk for obesity, diabetes and kidney disease: Genetic and environmental considerations. Postgrad Med. 2015 Jun;127(5):503-10. doi: 10.1080/00325481.2015.1021234. Epub 2015 Mar 7. Review. — View Citation

* Note: There are 89 references in all — Click here to view all references

Outcome

Type	Measure	Description	Time frame	Safety issue
Other	Donation intentions	A single, 4-point Likert-type item will agreement with the following statement: I plan to register as an organ donor in the next month (1-strongly disagree/4-strongly agree). The two categories representing agreement and disagreement, respectively, will be collapsed to create a dichotomous variable indicating intentions to register (1-yes/0-no).	3 months
Other	Support for organ donation	We will capture participants' general support for organ donation using a single 5-point Likert type item. The question will ask respondents to indicate the extent to which they support organ donation (1-not at all/5-totally).	3 months
Other	Perceptions of the Promotoras de Donación eLearning module	A series of 10, 4-point Likert-type questions will ascertain perceptions of the web-based eLearning module, including organization, length, realism, and interest in the material covered. A single 5-point Likert-type item will capture respondents' rating of the overall quality of the module (1-poor/5-excellent). Finally, two open-ended questions will ask respondents to indicate their most and least liked aspects of the module.	3 months
Primary	Donor registration	The proportion of mature Latina attending the trained lay health educator-led small group sessions who also register their intent to become a posthumous organ, tissue and eye donor	3 months
Secondary	Communication self-efficacy	Lay health educators will be asked to rate their level of confidence managing 10 communication skills relevant to discussing organ donation and promoting donor registration along numerical scales ranging from 0 (not at all confident) to 100 (totally confident). A global self-efficacy score will be obtained by summing the ratings for each item.	3 months
Secondary	Knowledge of organ donation	A series of 10 true/false questions previously developed and used to assess knowledge of organ donation in a community sample of Hispanic Americans. A global knowledge score will be created as the sum of all correctly answered questions, ranging from 0 to 10.	3 months

External Links

•   Centers for Disease Control and Prevention, National Center for Injury Prevention and Control. 10 Leading Causes of Death by Age Group, United States - 2013
•   Donate Life America. 2015 Annual Update
•   Feely TH, Moon S-II. Promoting Organ Donation through Public Education Campaigns: A Random-Effects Meta-Analysis.
•   Health Resources & Services Administration. Donation and transplantation: How does it work?; 2013
•   Health Resources & Services Administration. Materials for 50+ audiences
•   Howden LM, Meyer JA. Age and sex composition: 2010. 2010 Census Briefs. Issued May 2011. C2010BR-03
•   Revised Uniform Anatomical Gift Act (2006). Last Revised or Amended in 2009. National Conference of Commissioners of Uniform State Laws
•   U.S. Census Bureau. American Fact Finder
•   U.S. Census Bureau. U.S. Census Bureau projections show a slower growing, older, more diverse nation a half century from now
•   U.S. Department of Health & Human Services, Office of Minority Health, Think Cultural Health. Promoting Healthy Choices and Community Changes: An E-learning Program for Promotores De Salud