Krista L. Lentine|Didier A. Mandelbrot
Moving from Intuition to Data: Building the Evidence to Support and Increase Living Donor Kidney Transplantation
Saint Louis University|University of Wisconsin–Madison
living donor kidney transplantation ldkt offers patients esrd best chance longterm survival 1 although kidney transplantation general affords better outcomes longterm dialysis ldkt provides benefits deceased donor kidney transplantation including faster access transplant less time dialysis associated risks superior longterm patient allograft survival lower cost health care system however ldkt least common treatment option despite growing need manifest progressive rise united states kidney transplant waiting list 100000 candidates ldkt united states declined peak 6000 2004 current rates approximately 5500 per year 1 basis data surveys supporting positive public perceptions living donation number recent initiatives underway increase awareness ldkt including recent american society transplantation consensus statement promoting ldkt best treatment option eligible patients kidney failure 2 strategies increasing ldkt reported literature include educational interventions public campaigns program efficiencies cost mitigation efforts tax policies understanding effect interventions critical broader adoption many resource intensive also possible interventions although intuitively beneficial might little effect even negatively affect donor availability practice however deciphering existing literature challenging due diversity study designs end points new article barnieh et al 3 offers timely advance understanding current state evidence strategies designed increase ldkt rates authors performed scoping review electronic databases march 2016 identified 26 publications reporting strategies increase living donation prespecified outcomes interest ranged numbers ldkt donation events living donor evaluations potential donor contacts transplant center potential donors identified persons asked donate recipients evaluated discussion living donation stated intent donate consideration living donation 26 studies seven randomized controlled trials rcts assessing educational interventions two targeting potential donors two targeting potential recipients remaining studies used quasiexperimental nonrandomized intervention delivery observational designs examine array interventions characterizing nature available evidence review reveals education strategy empirically assessed rcts date education living donation ldkt complex comprehensive education involves multiple learnersthe transplant candidate potential living donors social support networksand requires communicating complex information risks benefits ldkt living donation alternative therapies different audiences 4 results identified educational rcts varied across outcomes two focused homebased education transplant candidates members social network reporting significant increases ldkt living donor evaluations brief house calls program developed rodrigue et al 5 involves delivery 60 90minute education session trained health educator candidates home including family members candidates social network one rct enrolling 169 transplant candidates ldkt rate house calls participants 52 compared 30 among received clinicbased education rct dutchbased adaptation homebased education reported similar effect ldkt 6 trials reported increased donor evaluations none rcts educational interventions including structured delivery educational materials health educator discussions dialysis centers ipod video intervention found positive effects outcome interest limitations homebased education include costs costeffectiveness training supporting staff perform intervention yet defined logistic issues geography may challenge ability centers send staff community importantly homebased education evidencebased strategy increasing ldkt access notable features including participation transplant candidate also chosen members social network personalized focus individual transplant candidate delivery intervention within community six quasiexperimental 13 observational studies identified scoping review assessed diverse strategies including programs education campaigns advocacy training donor champion efficiency webbased screening creation interdisciplinary teams removal disincentives tax benefits leave policies creation kidney paired donation incompatible transplantation programs quasiexperimental study identified increase ldkt structured educational program potential recipients families although risk bias unclear due missing information quality observational studies assessed due high risk bias five reported significant increases ldkt including living donor program promotion education preemptive transplantation use live donor champion laws prohibiting reimbursement recipients getting transplants counties adhere declaration istanbul key lesson scoping review barnieh et al 3 highquality evidence strategies increase ldkt currently limited next steps practitioners policymakers expand ldkt patients benefit others believe strategies potential improve informed consent access ldkt include 1 broader repeated ldkt education beginning earlier stages kidney disease involving patients social network 2 removal disincentives donation 3 optimized efficiency evaluation donor candidates 4 improving safety defensibility donor selection figure 1 however transplant programs nephrology providers insurers policymakers face limited resources formal evaluations needed guide costeffective investments minimum quasiexperimental designs ideally rcts provide strongest evidence possible studies must capture ldkt events hard outcome critical importance incorporate efforts minimize bias attention group comparability rigorous definitions exposure outcomes complete followupfigure 1 focal points future research define effective strategies increasing access living donor kidney transplantationunanswered questions regard ldkt educational interventions include much time educational content ie dose provided time point 4 also unclear whether dose vary time patients educated ldkt extent interventions tailored clear disparities ldkt basis raceethnicity factors attention improve equity nonwhite patients lower levels socioeconomic status health literacy important priority technology may enable efficient education delivery date little definitive evidence showing whether elearning telehealth telephonebased ldkt education programs effective programs deliver education inperson educator dissemination studies evidencebased programs also needed determine whether effects maintained programs scaled reach large numbers patients identify additional unexpected barriers may arise broader implementation although removal disincentives widely accepted necessary improve equity donation opportunities access ldkt striking lack evidence programs directed achieving financial neutrality well documented donors incur many types direct indirect costs donation process including travel medications lost income dependent care insurance barriers donation also reported 7 quasiexperimental studies remove disincentives ldkt identified scoping review significantly increase ldkt studies mainly examined primary tax credits statewide level individual level although endorse trials financial incentives potentially impactful approach increase ldkt testing incentives united states would require amendment national organ transplant act nota prohibits organ exchange valuable consideration 8 furthermore given substantial opportunities address uncompensated costs incurred donors believe efforts scientifically evaluate removal disincentives current priority nota prohibit reasonable payments associated expenses travel housing lost wages incurred donor new rct assessing effect reimbursement lost wages supported national living donor assistance act announced december 2016 8 living donor evaluation complex process begins someone considering donation contacts transplant program progresses array testing examinations visits program staff surprisingly donor candidates find takes long complete evaluation recipients may need start dialysis donor candidate completes evaluation quasiexperimental study scoping review evaluated webbased intervention selfscreening potential donors reported significant increase number contacts transplant center study also reported increased donor evaluations ldkt note statistical significance work needed define efficiency donor evaluation develop evidencebased standards address modifiable process delays 9 recent years growing body evidence emerging quantify refine estimates potential risks living donation new tool estimating projected 15year lifetime risks kidney failure absence donation according donor candidate demographic health profile 10 work needed validate improve precision tools incorporate donationattributable risks importantly methods communicating risk information population largely unstudied although interventions improve transparent risk communication longterm donor safety primarily directed increasing ldkt efforts essential supporting ldkt within defensible system practice informing evidencebased education donor screening strategies ldkt important treatment option kidney failure performed safely benefit many patients society increased response growing organ shortage empirical studies approaches support increase ldkt including formal evaluations education removal disincentives practice efficiency risk evaluation communication incorporating assessment hard outcomes associated costs feasible necessary advance field intuition evidencebased effective practices robust efforts address current knowledge gaps vital step increasing opportunities healthy willing persons give gift life patients needs disclosures none