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Meta-Analysis
. 2021 Apr 4;4(4):CD10829.
doi: 10.1002/14651858.CD010829.pub2.

Interventions for increasing solid organ donor registration

Alvin H Li  1 , Marcus Lo  2 , Jacob E Crawshaw  3 , Alexie J Dunnett  4 , Kyla L Naylor  2 , Amit X Garg  5 , Justin Presseau  3
Affiliations
Meta-Analysis

Interventions for increasing solid organ donor registration

Alvin H Li et al. Cochrane Database Syst Rev. .

Abstract

Background: A solution for increasing the number of available organs for transplantation is to encourage more individuals to register a commitment for deceased organ donation. However, the percentage of the population registered for organ donation remains low in many countries.

Objectives: To evaluate the benefits and harms of various interventions used to increase deceased organ donor registration.

Search methods: We searched the Cochrane Kidney and Transplant Register of Studies up to 11 August 2020 through contact with an Information Specialist using search terms relevant to this review. Studies in the Register are identified through searches of CENTRAL, MEDLINE, and EMBASE, conference proceedings, the International Clinical Trials Register Search Portal and ClinicalTrials.gov.

Selection criteria: We included all randomised controlled trials (RCTs), cluster RCTs and quasi-RCTs of interventions to promote deceased organ donor registration. We included studies if they measured self-reported or verified donor registration, intention to donate, intention to register a decision or number of individuals signing donor cards as outcomes.

Data collection and analysis: Two authors independently assessed retrieved studies and extracted data from included studies. We assessed studies for risk of bias. We obtained summary estimates of effect using a random-effects model and expressed results as risk ratios (RR) (95% confidence intervals; CI) for dichotomous outcomes and mean difference (MD; 95% CI) or standardised mean difference (SMD; 95% CI) for continuous outcomes. In multi-arm trials, data were pooled to create single pair-wise comparisons. Analyses were stratified by specific intervention setting where available.

Main results: Our search strategy identified 46 studies (47 primary articles, including one abstract) comprising 24 parallel RCTs, 19 cluster RCTs and 3 quasi-RCTs. Sample sizes ranged from 138 to 1,085,292 (median = 514). A total of 16 studies measured registration behaviour, 27 measured intention to register/donate and three studies measured both registration behaviour and intention to register. Interventions were delivered in a variety of different settings: schools (14 studies), driver's motor vehicle (DMV) centres (5), mail-outs (4), primary care centres (3), workplaces (1), community settings (7) and general public (12). Interventions were highly varied in terms of their content and included strategies such as educational sessions and videos, leveraging peer leaders, staff training, message framing, and priming. Most studies were rated as having high or unclear risk of bias for random sequence generation and allocation concealment and low risk for the remainder of the domains. Data from 34/46 studies (74%) were available for meta-analysis. Low certainty evidence showed organ donation registration interventions had a small overall effect on improving registration behaviour (16 studies, 1,294,065 participants: RR 1.30, 95% CI 1.19 to 1.43, I2 = 84%), intention to register/donate (dichotomous) (10 studies, 10,838 participants: RR 1.21, 95% CI 1.03 to 1.42, I2 = 91%) and intention to register/donate (continuous) (9 studies, 3572 participants: SMD 0.23, 95% CI 0.11 to 0.36, I2 = 67%). Classroom-based interventions delivered in a lecture format by individuals from the transplant community may be effective at increasing intention to register/donate (3 studies, 675 participants: RR 1.33, 95% CI 1.15 to 1.55, I² = 0%). Community interventions targeting specific ethnic groups were generally effective at increasing registration rates (k = 5, n = 4186; RR 2.14, 95% CI 1.35 to 3.40, I² = 85%), although heterogeneity was high. In particular, interventions delivered in the community by trained peer-leaders appear to be effective (3 studies, 3819 participant: RR 2.09, 95% CI 1.08 to 4.06, I² = 87%), although again, the data lacked robustness. There was some evidence that framing messages (e.g. anticipated regret) and priming individuals (e.g. reciprocity) in a certain way may increase intention to register/donate, however, few studies measured this effect on actual registration. Overall, the studies varied significantly in terms of design, setting, content and delivery. Selection bias was evident and a quarter of the studies could not be included in the meta-analysis due to incomplete outcome data reporting. No adverse events were reported.

Authors' conclusions: In our review, we identified a variety of approaches used to increase organ donor registration including school-based educational sessions and videos, leveraging peer leaders in the community, DMV staff training, targeted messaging and priming. The variability in outcome measures used and incompleteness in reporting meant that most data could not be combined for analysis. When data were combined, overall effect sizes were small in favour of intervention groups over controls, however, there was significant variability in the data. There was some evidence that leveraging peer-leaders in the community to deliver organ donation education may improve registration rates and classroom-based education from credible individuals (i.e. members of the transplant community) may improve intention to register/donate, however, there is no clear evidence favouring any particular approach. There was mixed evidence for simple, low-intensity interventions utilising message framing and priming. However, it is likely that interest in these strategies will persist due to their reach and scalability. Further research is therefore required to adequately address the question of the most effective interventions for increasing deceased organ donor registration.

PubMed Disclaimer

Conflict of interest statement

Alvin H Li has declared that they have no conflict of interest

Marcus Lo has declared that they have no conflict of interest

Jacob E Crawshaw has declared that they have no conflict of interest

Alexie J Dunnett has declared that they have no conflict of interest

Kyla Naylor has received an Astellas Training Award.

Amit Garg received partnership funding from Astellas Canada for a Canadian Institutes of Health Research funded grant to improve the practice of living kidney donation.

Justin Presseau has declared that they have no conflict of interest

Figures

1
1
Flow chart showing study selection
2
2
Risk of bias summary: review authors' judgements about each risk of bias item for each included study.
3
3
Risk of bias graph: review authors' judgements about each risk of bias item presented as percentages across all included studies.
4
4
5
5
6
6
1.1
1.1. Analysis
Comparison 1: Registration behaviour: dichotomous, Outcome 1: Registration behaviour: ICC adjusted (dichotomous)
1.2
1.2. Analysis
Comparison 1: Registration behaviour: dichotomous, Outcome 2: Registration behaviour (dichotomous): primary care setting (ICC adjusted)
1.3
1.3. Analysis
Comparison 1: Registration behaviour: dichotomous, Outcome 3: Registration behaviour (dichotomous): community setting (ICC adjusted)
2.1
2.1. Analysis
Comparison 2: Registration intention: dichotomous, Outcome 1: Registration intention: ICC adjusted (dichotomous)
2.2
2.2. Analysis
Comparison 2: Registration intention: dichotomous, Outcome 2: Registration intention (dichotomous): school setting (ICC adjusted)
3.1
3.1. Analysis
Comparison 3: Registration intention: continuous, Outcome 1: Registration intention: ICC adjusted (continuous)
4.1
4.1. Analysis
Comparison 4: Lecture with member of transplant community versus control, Outcome 1: Intention to register
5.1
5.1. Analysis
Comparison 5: Lecture with video versus control, Outcome 1: Self‐reported registration
6.1
6.1. Analysis
Comparison 6: Leveraging peer leaders versus control, Outcome 1: Verified registration
7.1
7.1. Analysis
Comparison 7: Immediate versus delayed registration opportunity, Outcome 1: Signed donor cards or forms
8.1
8.1. Analysis
Comparison 8: Anticipated regret versus control, Outcome 1: Intention to register
8.2
8.2. Analysis
Comparison 8: Anticipated regret versus control, Outcome 2: Verified registration
9.1
9.1. Analysis
Comparison 9: Reciprocity prime versus control, Outcome 1: Intention to donate
9.2
9.2. Analysis
Comparison 9: Reciprocity prime versus control, Outcome 2: Verified registration
10.1
10.1. Analysis
Comparison 10: Omitting affective attitude questions versus control, Outcome 1: Intention to register
10.2
10.2. Analysis
Comparison 10: Omitting affective attitude questions versus control, Outcome 2: Accepting donor card
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Mayrhofer 2006 {published data only}
    1. Mayrhofer-Reinhartshuber D, Fitzgerald A, Benetka G, Fitzgerald R. Effects of financial incentives on the intention to consent to organ donation: a questionnaire survey. Transplantation Proceedings 2006;38(9):2756-60. [MEDLINE: ] - PubMed
McDonald 2007 {published data only}
    1. McDonald DD, Ferreri R, Jin C, Mendez A, Smail J, Balcom P, et al. Willingness to communicate organ donation intention. Public Health Nursing 2007;24(2):151-9. [MEDLINE: ] - PubMed
McDonald 2013 {published data only}
    1. McDonald EL, Powell CL, Perryman JP, Thompson NJ, Arriola KR. Understanding the relationship between trust in health care and attitudes toward living donor transplant among African Americans with end-stage renal disease. Clinical Transplantation 2013;27(4):619-26. [MEDLINE: ] - PMC - PubMed
NCT01048437 {published data only}
    1. Waterman A. Educating Missouri patients about preemptive living donor transplantation. www.clinicaltrials.gov/ct2/show/NCT01048437 (first received 13 January 2010).
NCT01786525 {published data only}
    1. Rodrigue JR. House calls and web-based decision support: improving access to live donor kidney transplantation. www.clinicaltrials.gov/ct2/show/NCT01786525 (first received 8 February 2013).
NCT01855438 {published data only}
    1. Traino HM. Increasing communication about live donor kidney transplant. www.clinicaltrials.gov/ct2/show/NCT01855438 (first received 16 May 2013).
Philpot 2016 {published data only}
    1. Philpot SJ, Aranha S, Pilcher DV, Bailey M. Randomised, double blind, controlled trial of the provision of information about the benefits of organ donation during a family donation conversation. PLoS ONE [Electronic Resource] 2016;11(6):e0155778. [MEDLINE: ] - PMC - PubMed
Piccoli 2004 {published data only}
    1. Piccoli G, Soragna G, Bergamo D, Burdese M, Quaglia M, Mezza E, et al. Opinions on renal transplantation in high school students. A RCT on the effect of a short term educational intervention [abstract no: M493]. Nephrology Dialysis Transplantation 2002;17(Suppl 12):184. [CENTRAL: CN-00625535]
    1. Piccoli GB, Soragna G, Putaggio S, Burdese M, Longo P, Rinaldi D, et al. Efficacy of an educational program on dialysis, renal transplantation, and organ donation on the opinions of high school students: a randomized controlled trial. Transplantation Proceedings 2004;36(3):431-2. [MEDLINE: ] - PubMed
    1. Piccoli GB, Soragna G, Putaggio S, Mezza E, Burdese M, Vespertino E, et al. Efficacy of an educational programme for secondary school students on opinions on renal transplantation and organ donation: a randomized controlled trial. Nephrology Dialysis Transplantation 2006;21(2):499-509. [MEDLINE: ] - PubMed
PREPARED 2012 {published data only}
    1. Boulware LE, Ephraim PL, Ameling J, Lewis-Boyer L, Rabb H, Greer RC, et al. Effectiveness of informational decision aids and a live donor financial assistance program on pursuit of live kidney transplants in African American hemodialysis patients. BMC Nephrology 2018;19(1):107. [MEDLINE: ] - PMC - PubMed
    1. Ephraim PL, Powe NR, Rabb H, Ameling J, Auguste P, Lewis-Boyer L, et al. The providing resources to enhance African American patients' readiness to make decisions about kidney disease (PREPARED) study: protocol of a randomized controlled trial. BMC Nephrology 2012;13:135. [MEDLINE: ] - PMC - PubMed
Rodrigue 2007 {published data only}
    1. Rodrigue JR, Cornell D, Kaplan B, Lin J, Howard R. Reducing racial disparity in live kidney donation: results of a home-based intervention program [abstract]. Transplantation 2006;82(1 Suppl 3):796.
    1. Rodrigue JR, Cornell DL, Howard RJ, Kaplan B, Lin J. Randomized evaluation of a home-based educational program to increase living kidney donation [abstract no: 1304]. American Journal of Transplantation 2005;5(Suppl 11):488. [CENTRAL: CN-00644312]
    1. Rodrigue JR, Cornell DL, Kaplan B, Howard RJ. A randomized trial of a home-based educational approach to increase live donor kidney transplantation: effects in blacks and whites. American Journal of Kidney Diseases 2008;51(4):663-70. [MEDLINE: ] - PubMed
    1. Rodrigue JR, Cornell DL, Kaplan B, Howard RJ. Patients' willingness to talk to others about living kidney donation. Progress in Transplantation 2008;18(1):25-31. [MEDLINE: ] - PubMed
    1. Rodrigue JR, Cornell DL, Lin JK, Kaplan B, Howard RJ. Increasing live donor kidney transplantation: a randomized controlled trial of a home-based educational intervention. American Journal of Transplantation 2007;7(2):394-401. [MEDLINE: ] - PubMed
Siegel 2015 {published data only}
    1. Siegel JT, Navarro MA, Thomson AL. The impact of overtly listing eligibility requirements on MTurk: an investigation involving organ donation, recruitment scripts, and feelings of elevation. Social Science & Medicine 2015;142:256-60. [MEDLINE: ] - PubMed
Siminoff 2015 {published data only}
    1. Siminoff LA, Traino HM, Genderson MW. Communicating effectively about organ donation: a randomized trial of a behavioral communication intervention to improve discussions about donation. Transplantation Direct 2015;1(2):e5. [MEDLINE: ] - PMC - PubMed
Studts 2010 {published data only}
    1. Studts JL, Ruberg JL, McGuffin SA, Roetzer LM. Decisions to register for the National Marrow Donor Program: rational vs emotional appeals. Bone Marrow Transplantation 2010;45(3):422-8. [EMBASE: 50600756] - PubMed
Sullivan 2012 {published data only}
    1. Huml AM, Sullivan CM, Pencak JA, Sehgal AR. Accuracy of dialysis medical records in determining patients' interest in and suitability for transplantation. Clinical Transplantation 2013;27(4):541-5. [MEDLINE: ] - PMC - PubMed
    1. Sullivan C, Leon JB, Sayre SS, Marbury M, Ivers M, Pencak JA, et al. Impact of navigators on completion of steps in the kidney transplant process: a randomized, controlled trial. Clinical Journal of the American Society of Nephrology: CJASN 2012;7(10):1639-45. [MEDLINE: ] - PMC - PubMed
TALK 2011 {published data only}
    1. Bornemann K, Croswell E, Abaye M, Bryce CL, Chang CH, Good DS, et al. Protocol of the KTFT-TALK study to reduce racial disparities in kidney transplant evaluation and living donor kidney transplantation. Contemporary Clinical Trials 2017;53:52-9. [MEDLINE: ] - PMC - PubMed
    1. Boulware L, Ephraim P, Hill-Briggs F, Krause E, Melancon JK, Kolotos M, et al. Effectiveness of educational and behavioral interventions to improve pursuit of pre-emptive living related kidney transplantation: the Talking About Live Kidney donation (TALK) study [abstract no: 420]. American Journal of Transplantation 2011;11(Suppl 2):156. [EMBASE: 70405454]
    1. Boulware LE, Hill-Briggs F, Kraus ES, Melancon JK, Falcone B, Ephraim PL, 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. American Journal of Kidney Diseases 2013;61(3):476-86. [MEDLINE: ] - PMC - PubMed
    1. Boulware LE, Hill-Briggs F, Kraus ES, Melancon JK, McGuire R, Bonhage B, et al. Protocol of a randomized controlled trial of culturally sensitive interventions to improve African Americans' and non-African Americans' early, shared, and informed consideration of live kidney transplantation: the Talking About Live Kidney Donation (TALK) Study. BMC Nephrology 2011;12:34. [MEDLINE: ] - PMC - PubMed
    1. Depasquale N, Hill-Briggs F, Darrell L, Boyer LL, Ephraim P, Boulware LE. Feasibility and acceptability of the TALK social worker intervention to improve live kidney transplantation. Health & Social Work 2012;37(4):234-49. [MEDLINE: ] - PMC - PubMed
TALKS 2015 {published data only}
    1. Strigo TS, Ephraim PL, Pounds I, Hill-Briggs F, Darrell L, Ellis M, et al. The TALKS study to improve communication, logistical, and financial barriers to live donor kidney transplantation in African Americans: protocol of a randomized clinical trial. BMC Nephrology 2015;16:160. [MEDLINE: ] - PMC - PubMed
Vinokur 2006 {published data only}
    1. Vinokur AD, Merion RM, Couper MP, Jones EG, Dong Y. Educational web-based intervention for high school students to increase knowledge and promote positive attitudes toward organ donation. Health Education & Behavior 2006;33(6):773-86. [MEDLINE: ] - PubMed
Wang 2018b {published data only}
    1. Wang X, Zhao X. The mediating role of temporal considerations on the effects of self-affirmation on responses to organ donation messages. Health Communication 2018;33(2):148-55. [MEDLINE: ] - PubMed
Waterman 2015 {published data only}
    1. Waterman A, Peipert J, Beaumont J. Efficacy of at-home transplant education on transplant knowledge and pursuit in low-income and black dialysis patients with varying educational characteristics. American Journal of Transplantation 2018;18(Suppl 4):338. [EMBASE: 622280419]
    1. Waterman A, Peipert J, McSorley AM, Goalby C, Peace L. At-home transplant education increases black and low-income dialysis patients' transplant knowledge, attitudes, informed decision-making, and pursuit: An explore transplant @ home randomized controlled trial [abstract]. American Journal of Transplantation 2017;17(Suppl 3):381. [EMBASE: 615705753]
    1. Waterman AD, McSorley AM, Peipert JD, Goalby CJ, Peace LJ, Lutz PA, et al. Explore Transplant at Home: a randomized control trial of an educational intervention to increase transplant knowledge for black and white socioeconomically disadvantaged dialysis patients. BMC Nephrology 2015;16:150. [MEDLINE: ] - PMC - PubMed
    1. Waterman AD, Peipert JD, Beaumont JL. Efficacy of at-home transplant education on transplant knowledge and pursuit in low-income and black dialysis patients with varying educational characteristics [abstract]. Transplantation 2018;102(7 Suppl 1):S195-6. [EMBASE: 623701490]
    1. Waterman AD, Peipert JD, McSorley AM, Goalby CJ, Beaumont JL, Peace L. Direct delivery of kidney transplant education to black and low-income patients receiving dialysis: a randomized controlled trial. American Journal of Kidney Diseases 2019;74(5):640-9. [MEDLINE: ] - PMC - PubMed
Whisenant 2012 {published data only}
    1. Whisenant DP, Woodring B. Improving attitudes and knowledge toward organ donation among nursing students. International Journal of Nursing Education Scholarship 2012;9:22. [MEDLINE: ] - PubMed
YPT 2014 {published data only}
    1. Peipert J, Hays R, Kawakita S, Beaumont J, Waterman A. Measurement characteristics of the Knowledge Assessment of Renal Transplantation. Transplantation 2019;103(3):565-72. [PMID: ] - PMC - PubMed
    1. Waterman A, Cui Y, Peipert J, Beaumont J, Anderson C, Paiva A, Robbins M. Your path to transplant education increases patients' transplant knowledge, attitudes, informed decision-making, and pursuit: An randomized controlled trial [abstract]. American Journal of Transplantation 2019;19(Suppl 3):420. [EMBASE: 628455044]
    1. Waterman AD, Robbins ML, Paiva AL, Peipert JD, Kynard-Amerson CS, Goalby CJ, et al. Your Path to Transplant: a randomized controlled trial of a tailored computer education intervention to increase living donor kidney transplant. BMC Nephrology 2014;15:166. [MEDLINE: ] - PMC - PubMed

References to ongoing studies

ACTRN12614000690651 {published data only}
    1. Sanson-Fisher R. The impact of brief and enhanced information videos on increasing organ donor registration rates among TAFE students. www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=366576&isRe... (first received 1 July 2014).
Andrews 2012a {published data only}
    1. Andrews A, Jenkins-Riley H, Haney A, Chapman R, Yee J, Resnicow K. Peer mentoring to increase deceased organ donation among ESRD patients [abstract no: 15]. American Journal of Kidney Diseases 2012;59(4):A18. [EMBASE: 71074628]
iDecide 2010 {published data only}
    1. Albright C, Dela Cruz MR, Kadowaki J, Sagayadoro T, Wong L. Educating ethnic minority teens to be a designated organ donor on their first driver's license: Hawaii's iDecide project [abstract no: 846]. American Journal of Transplantation 2010;10(Suppl 4):287. [EMBASE: 70464222]
NCT02318849 {published data only}
    1. Albright C. Online Intervention for ANHPI College Students (iDecide). www.clinicaltrials.gov/ct2/show/NCT02318849 (first received 17 December 2014).
RegisterNow‐1 2017 {published data only}
    1. Li AH, Garg AX, Prakash V, Grimshaw JM, Taljaard M, Mitchell J, et al. Promoting deceased organ and tissue donation registration in family physician waiting rooms (RegisterNow-1 trial): study protocol for a pragmatic, stepped-wedge, cluster randomized controlled registry. Trials [Electronic Resource] 2017;18(1):610. [MEDLINE: ] - PMC - PubMed
Yee 2014 {published data only}
    1. Yee J, Zhang N, Smith A, Andrews A, Jenkins-Riley H, Stav S, et al. Comparison of staff vs patient attitudes on organ and tissue donation [abstract]. American Journal of Kidney Diseases 2014;63(5):A116. [EMBASE: 71448656]

Additional references

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References to other published versions of this review

Li 2013b
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