Explore Transplant at Home: a randomized control trial of an educational intervention to increase transplant knowledge for Black and White socioeconomically disadvantaged dialysis patients

Amy D Waterman, Anna-Michelle M McSorley, John D Peipert, Christina J Goalby, Leanne J Peace, Patricia A Lutz, Jessica L Thein, Amy D Waterman, Anna-Michelle M McSorley, John D Peipert, Christina J Goalby, Leanne J Peace, Patricia A Lutz, Jessica L Thein

Abstract

Background: Compared to others, dialysis patients who are socioeconomically disadvantaged or Black are less likely to receive education about deceased donor kidney transplant (DDKT) and living donor kidney transplant (LDKT) before they reach transplant centers, often due to limited availability of transplant education within dialysis centers. Since these patients are often less knowledgeable or ready to pursue transplant, educational content must be simplified, made culturally sensitive, and presented gradually across multiple sessions to increase learning and honor where they are in their decision-making about transplant. The Explore Transplant at Home (ETH) program was developed to help patients learn more about DDKT and LDKT at home, with and without telephone conversations with an educator.

Methods and study design: In this randomized controlled trial (RCT), 540 low-income Black and White dialysis patients with household incomes at or below 250 % of the federal poverty line, some of whom receive financial assistance from the Missouri Kidney Program, will be randomly assigned to one of three education conditions: (1) standard-of-care transplant education provided by the dialysis center, (2) patient-guided ETH (ETH-PG), and (3) health educator-guided ETH (ETH-EG). Patients in the standard-of-care condition will only receive education provided in their dialysis centers. Those in the two ETH conditions will receive four video and print modules delivered over an 8 month period by mail, with the option of receiving supplementary text messages weekly. In addition, patients in the ETH-EG condition will participate in multiple telephonic educational sessions with a health educator. Changes in transplant knowledge, decisional balance, self-efficacy, and informed decision making will be captured with surveys administered before and after the ETH education.

Discussion: At the conclusion of this RCT, we will have determined whether an education program administered to socioeconomically disadvantaged dialysis patients, over several months directly in their homes, can help more individuals learn about the options of DDKT and LDKT. We also will be able to examine the efficacy of different educational delivery approaches to further understand whether the addition of a telephone educator is necessary for increasing transplant knowledge.

Trial registration: ClinicalTrials.gov, NCT02268682.

Figures

Fig. 1
Fig. 1
Intervention region: Missouri dialysis centers
Fig. 2
Fig. 2
Explore Transplant at Home study design

References

    1. United States Renal Data System . 2014 Annual Data Report: Epidemiology of Kidney Disease in the United States. Bethesda, MD: National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases; 2014.
    1. Mange KC, Joffe MM, Feldman HI. Effect of the use or nonuse of long-term dialysis on the subsequent survival of renal transplants from living donors. N Engl J Med. 2001;344(10):726–731. doi: 10.1056/NEJM200103083441004.
    1. Neipp M, Karavul B, Jackobs S, Meyer zu Vilsendorf A, Richter N, Becker T, Schwarz A, Klempnauer J. Quality of life in adult transplant recipients more than 15 years after kidney transplantation. Transplantation. 2006;81(12):1640–1644. doi: 10.1097/01.tp.0000226070.74443.fb.
    1. Centers for Medicare & Medicaid Services (CMS), Department of Health and Human Services. Medicare and Medicaid programs; conditions for coverage for end-stage renal disease facilities. Final rule. Fed Regist. 2008;73(73):20369–484.
    1. Bleyer A: Prevention of sudden cardiac death in dialysis patients: A nephrologist's perspective. Dialysis & Transplantation 2008;37(4):124–129.
    1. Brunkhorst R, Lufft V, Dannenberg B, Kliem V, Tusch G, Pichlmayr R. Improved survival in patients with type 1 diabetes mellitus after renal transplantation compared with hemodialysis: a case–control study. Transplantation. 2003;76(1):115–119. doi: 10.1097/01.TP.0000070225.38757.81.
    1. Meier-Kriesche HU, Port FK, Ojo AO, Rudich SM, Hanson JA, Cibrik DM, Leichtman AB, Kaplan B. Effect of waiting time on renal transplant outcome. Kidney Int. 2000;58(3):1311–1317. doi: 10.1046/j.1523-1755.2000.00287.x.
    1. Waterman AD, Peipert JD, Hyland SS, McCabe MS, Schenk EA, Liu J. Modifiable patient characteristics and racial disparities in evaluation completion and living donor transplant. Clin J Am Soc Nephrol. 2013;8:995–1002. doi: 10.2215/CJN.08880812.
    1. Kutner NG, Zhang R, Huang Y, Johansen KL. Impact of race on predialysis discussions and kidney transplant preemptive wait-listing. Am J Nephrol. 2012;35(4):305–311. doi: 10.1159/000336891.
    1. Johns TS, Estrella MM, Crews DC, Appel LJ, Anderson CA, Ephraim PL, Cook C, Boulware LE. Neighborhood socioeconomic status, race, and mortality in young adult dialysis patients. J Am Soc Nephrol. 2014;25(11):2649–2657. doi: 10.1681/ASN.2013111207.
    1. Hardinger KL, Hutcherson T, Preston D, Murillo D. Influence of pill burden and drug cost on renal function after transplantation. Pharmacotherapy. 2012;32(5):427–432. doi: 10.1002/j.1875-9114.2012.01032.x.
    1. McGee J, Jackson NR, Slakey DP. Disability and kidney transplantation in the United States. Clin Transpl. 2012;26(3):377–381. doi: 10.1111/j.1399-0012.2012.01612.x.
    1. Chenitz KB, Fernando M, Shea JA. In-center hemodialysis attendance: patient perceptions of risks, barriers, and recommendations. Hemodial Int. 2014;18(2):364–373. doi: 10.1111/hdi.12139.
    1. Chan KE, Thadhani RI, Maddux FW. Adherence barriers to chronic dialysis in the United States. J Am Soc Nephrol. 2014;25(11):2642–2648. doi: 10.1681/ASN.2013111160.
    1. Harley KT, Streja E, Rhee CM, Molnar MZ, Kovesdy CP, Amin AN, Kalantar-Zadeh K. Nephrologist caseload and hemodialysis patient survival in an urban cohort. J Am Soc Nephrol. 2013;24:1–10. doi: 10.1681/ASN.2013020123.
    1. Balhara KS, Kucirka LM, Jaar BG, Segev DL. Disparities in provision of transplant education by profit status of the dialysis center. Am J Transplant. 2012;12(11):3104–3110. doi: 10.1111/j.1600-6143.2012.04207.x.
    1. Patzer RE, Plantinga L, Krisher J, Pastan SO. Dialysis facility and network factors associated with low kidney transplantation rates among United States dialysis facilities. Am J Transplant. 2014;14(7):1562–1572. doi: 10.1111/ajt.12749.
    1. Waterman AD, Goalby C, Hyland SS, McCabe M, Dinkel KM (2012) Transplant Education Practices and Attitudes in Dialysis Centers: Dialysis Leadership Weighs In. J Nephrol Therapeutic S4:007. doi:10.4172/2161-0959.S4-007.
    1. Waterman A, Hyland S, Stanley SL, Barrett AC, Millinger R: Improving education increases dialysis patients' pursuit of transplant: Explore Transplant RCT findings. In: American Transplant Congress: May 30-June 3 2009; Boston, MA: American journal of transplantation; 2009: 360
    1. Waterman AD, Goalby C, Hyland S: Dialysis providers ability to educate patients about transplant: good education partners? In: American Transplant Congress: May 30-June 3 2009; Boston, MA; 2009
    1. LaPointe RD, Hays R, Baliga P, Cohen DJ, Cooper M, Danovitch GM, Dew MA, Gordon EJ, Mandelbrot DA, McGuire S, et al. Consensus conference on best practices in live kidney donation: recommendations to optimize education, access, and care. Am J Transplant. 2015;15(4):912–22.
    1. Boulware LE, Hill-Briggs F, Kraus ES, Melancon JK, Falcone B, Ephraim PL, Jaar BG, Gimenez L, Choi M, Senga M, et al. Effectiveness of educational and social worker interventions to activate patients' discussion and pursuit of preemptive living donor kidney transplantation: a randomized controlled trial. Am J Kidney Dis. 2012;61(3):476–86. doi: 10.1053/j.ajkd.2012.08.039.
    1. Schmittdiel JA, Brown SD, Neugebauer R, Adams SR, Adams AS, Wiley D, Ferrara A. Health-plan and employer-based wellness programs to reduce diabetes risk: the Kaiser permanente Northern California NEXT-D Study. Prev Chronic Dis. 2013;10:E15. doi: 10.5888/pcd10.120146.
    1. Rodrigue JR, Paek MJ, Egbuna O, Waterman AD, Schold JD, Pavlakis M, Mandelbrot DA. Making house calls increases living donor inquiries and evaluations for blacks on the kidney transplant waiting list. Transplantation. 2014;98(9):979–86. doi: 10.1097/TP.0000000000000165.
    1. Cole-Lewis H, Kershaw T. Text messaging as a tool for behavior change in disease prevention and management. Epidemiol Rev. 2010;32(1):56–69. doi: 10.1093/epirev/mxq004.
    1. Lim MS, Hocking JS, Hellard ME, Aitken CK. SMS STI: a review of the uses of mobile phone text messaging in sexual health. Int J STD AIDS. 2008;19(5):287–290. doi: 10.1258/ijsa.2007.007264.
    1. Chen RA, Scott S, Mattern WD, Mohini R, Nissenson AR. The case for disease management in chronic kidney disease. DM. 2006;9(2):86–92.
    1. NASW Standards for Social Work Case Management []
    1. Standards of practice for case management []
    1. Glanz K, Bishop DB. The role of behavioral science theory in development and implementation of public health interventions. Annu Rev Public Health. 2010;31:399–418. doi: 10.1146/annurev.publhealth.012809.103604.
    1. Prochaska JO, Redding CA, Evers KE. The transtheoretical model and stages of change. In: Glanz K, Rimer B, Lewis F, editors. Health Behavior and Health Education. 3. San Francisco, CA: Jossey-Bass; 2002. pp. 99–120.
    1. Prochaska JO. Decision making in the transtheoretical model of behavior change. Med Decis Making. 2008;28(6):845–849. doi: 10.1177/0272989X08327068.
    1. Prochaska JO, DiClemente CC. Stages and processes of self-change of smoking: toward an integrative model of change. J Consult Clin Psychol. 1983;51(3):390–395. doi: 10.1037/0022-006X.51.3.390.
    1. Prochaska JO, DiClemente CC, Norcross JC. In search of how people change: applications to addictive behaviors. Am Psychol. 1992;47(9):1102–1114. doi: 10.1037/0003-066X.47.9.1102.
    1. Prochaska JO, DiClemente CC, Velicer WF, Rossi JS. Standardized, individualized, interactive, and personalized self-help programs for smoking cessation. Health Psychol. 1993;12(5):399–405. doi: 10.1037/0278-6133.12.5.399.
    1. Prochaska JO, Norcross JC. Stages of change. Psychother Theory Res Pract Train. 2001;38(4):443–448. doi: 10.1037/0033-3204.38.4.443.
    1. Prochaska JO, Velicer WF, Redding C, Rossi JS, Goldstein M, DePue J, Greene GW, Rossi SR, Sun X, Fava JL, et al. Stage-based expert systems to guide a population of primary care patients to quit smoking, eat healthier, prevent skin cancer, and receive regular mammograms. Prev Med. 2005;41(2):406–16. doi: 10.1016/j.ypmed.2004.09.050.
    1. Robbins ML, Levesque DA, Redding CA, Johnson JL, Prochaska JO, Rohr MS, Peters TG. Assessing family members’ motivational readiness and decision making for consenting to cadaveric organ donation. J Health Psychol. 2001;6(5):523–535. doi: 10.1177/135910530100600506.
    1. Hall KL, Robbins ML, Paiva A, Knott JE, Harris L, Mattice B. Donation intentions among African American college students: decisional balance and self-efficacy measures. J Behav Med. 2007;30(6):483–495. doi: 10.1007/s10865-007-9121-8.
    1. Waterman AD, Brown J, Witten B, Goodnight V, Mallery C, Schenk E, Goalby C, Frazier L, Peace L, Hyland SS: Preemptive Transplant Knowledge and Decision-Making: Impact of a Community Chronic Kidney Disease Education Class. In: National Kidney Foundation Spring Clinical Meetings. National Harbor, MD; 2012
    1. United States Census Bureau: Text-Messaging Soars. In: Census Bureau Releases 2010 Statistical Abstract Depicting the State of Our Nation. 2009.
    1. United States Census Bureau: Homes With Cell Phones Nearly Double in First Half of Decade. 2014. Washington, DC: United States Census Bureau; 2009..
    1. Vervloet M, van Dijk L, Santen-Reestman J, van Vlijmen B, van Wingerden P, Bouvy ML, de Bakker DH. SMS reminders improve adherence to oral medication in type 2 diabetes patients who are real time electronically monitored. J Med Inform. 2012;81(9):594–604. doi: 10.1016/j.ijmedinf.2012.05.005.
    1. Leong KC, Chen WS, Leong KW, Mastura I, Mimi O, Sheikh MA, Zailinawati AH, Ng CJ, Phua KL, Teng CL. The use of text messaging to improve attendance in primary care: a randomized controlled trial. Fam Pract. 2006;23(6):699–705. doi: 10.1093/fampra/cml044.
    1. Siebens J: Extended Measures of Well-Being: Living Conditions in the United States: 2011. Washington DC: United States Census Bureau; 2013. 70–136.
    1. Smith A: Americans and Their Cell Phones. In. Washington, DC: Pew Internet and American Life Project; 2011:1–19
    1. SongWhale []
    1. Hekkers V. Insurance reimbursement. Case Manager. 2005;16(3):34–35. doi: 10.1016/j.casemgr.2005.03.006.
    1. O’Connor AM. Validation of a decisional conflict scale. Med Decis Making. 1995;15(1):25–30. doi: 10.1177/0272989X9501500105.
    1. Waterman A, Robbins M, Paiva A, Hyland SS. Kidney patients' intention to receive a deceased donor transplant: Development of stage of change, decisional balance, and self-efficacy measures. J Health Psychol. 2010;15(3):436–445. doi: 10.1177/1359105309351248.
    1. Waterman AD, Robbins ML, Paiva AL, Peipert JD, Davis LA, Hyland SS, Schenk EA, Baldwin KA, Amoyal NR. Measuring kidney patients’ motivation to pursue living donor kidney transplant: development of stage of change, decisional balance and self-efficacy measures. J Health Psychol. 2015;20(2):210–221. doi: 10.1177/1359105313501707.
    1. Guyatt GH, Feeny DH, Patrick DL. Measuring health-related quality of life. Ann Intern Med. 1993;118(8):622–629. doi: 10.7326/0003-4819-118-8-199304150-00009.
    1. LaVeist TA, Isaac LA, Williams KP. Mistrust of health care organizations is associated with underutilization of health services. Health Serv Res. 2009;44(6):2093–2105. doi: 10.1111/j.1475-6773.2009.01017.x.
    1. Boulware LE, Ratner LE, Cooper LA, Sosa JA, LaVeist TA, Powe NR. Understanding disparities in donor behavior: race and gender differences in willingness to donate blood and cadaveric organs. Med Care. 2002;40(2):85–95. doi: 10.1097/00005650-200202000-00003.
    1. National Institutes of Health Centers for Population Health and Health Disparities: Core Measures Database. Edited by Centers for Population Health and Health Disparities. Bethesda, MD 2012.
    1. Gehlert S: University of Chicago CIHDR Women’s Community Study Questionnaire. Center for Interdisciplinary Health Disparities Research, University of Chicago 2008.
    1. Chew LD, Griffin JM, Partin MR, Noorbaloochi S, Grill JP, Snyder A, Bradley KA, Nugent SM, Baines AD, Vanryn M. Validation of screening questions for limited health literacy in a large VA outpatient population. J Gen Intern Med. 2008;23(5):561–566. doi: 10.1007/s11606-008-0520-5.
    1. 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;42(2):377–381. doi: 10.1016/j.jbi.2008.08.010.
    1. Murray DM. Design and Analysis of Group-Randomized Control Trials. Oxford: Oxford University Press; 1998.
    1. Rubin DB. Multiple imputation for nonresponse in surveys. New York: John Wiley & Sons, Inc.; 1987.
    1. Nordio M, Limido A, Maggiore U, Nichelatti M, Postorino M, Quintaliani G. Survival in patients treated by long-term dialysis compared with the general population. Am J Kidney Dis. 2012;59(6):819–828. doi: 10.1053/j.ajkd.2011.12.023.
    1. Sullivan C, Leon JB, Sayre SS, Marbury M, Ivers M, Pencak JA, Bodziak KA, Hricik DE, Morrison EJ, Albert JM, et al. Impact of navigators on completion of steps in the kidney transplant process: a randomized, controlled trial. Clin J Am Soc Nephrol. 2012;7(10):1639–45. doi: 10.2215/CJN.11731111.
    1. Gordon EJ, Mullee JO, Ramirez DI, MacLean J, Olivero M, Feinglass J, Carney P, O'Connor K, Caicedo JC. Hispanic/Latino concerns about living kidney donation: a focus group study. Prog Transplant. 2014;24(2):152–162. doi: 10.7182/pit2014946.
    1. Gordon EJ, Reddy E, Gil S, Feinglass J, Rodde J, Abecassis MM, Caicedo JC. Culturally competent transplant program improves Hispanics’ knowledge and attitudes about live kidney donation and transplant. Prog Transplant. 2014;24:56–68. doi: 10.7182/pit2014378.

Source: PubMed

3
S'abonner