Abstract
BackgroundLive kidney transplantation (LKT) is underutilized, particularly among ethnic/racial minorities. The effectiveness of culturally sensitive educational and behavioral interventions to encourage patients' early, shared (with family and health care providers) and informed consideration of LKT and ameliorate disparities in consideration of LKT is unknown.Methods/DesignWe report the protocol of the Talking About Live Kidney Donation (TALK) Study, a two-phase study utilizing qualitative and quantitative research methods to design and test culturally sensitive interventions to improve patients' shared and informed consideration of LKT. Study Phase 1 involved the evidence-based development of culturally sensitive written and audiovisual educational materials as well as a social worker intervention to encourage patients' engagement in shared and informed consideration of LKT. In Study Phase 2, we are currently conducting a randomized controlled trial in which participants with progressing chronic kidney disease receive: 1) usual care by their nephrologists, 2) usual care plus the educational materials, or 3) usual care plus the educational materials and the social worker intervention. The primary outcome of the randomized controlled trial will include patients' self-reported rates of consideration of LKT (including family discussions of LKT, patient-physician discussions of LKT, and identification of an LKT donor). We will also assess differences in rates of consideration of LKT among African Americans and non-African Americans.DiscussionThe TALK Study rigorously developed and is currently testing the effectiveness of culturally sensitive interventions to improve patients' and families' consideration of LKT. Results from TALK will provide needed evidence on ways to enhance consideration of this optimal treatment for patients with end stage renal disease.Trial RegistrationClinicalTrials.gov number, NCT00932334
Highlights
Live kidney transplantation (LKT) is underutilized, among ethnic/racial minorities
We actively identify potentially eligible participants by screening nephrology practices’ administrative and clinical records on all patients seen at the clinical practice sites over the previous 12 months to identify persons with CKD stages 4 or 5
Despite the success of LKT as a treatment strategy for end stage renal disease (ESRD), improvements in utilization have been largely stagnant in recent years, and ethnic/racial disparities in utilization of LKT persist [2,27]
Summary
Despite the success of LKT as a treatment strategy for ESRD, improvements in utilization have been largely stagnant in recent years, and ethnic/racial disparities in utilization of LKT persist [2,27]. Efforts to improve early consideration of LKT are advocated [28], effective strategies for engaging ethnic/racial minority and non-minority patients and their families in early, shared and informed consideration of LKT have not been studied. The TALK study has rigorously developed and is currently testing the effectiveness of novel strategies to improve ethnic/racial minority and non-minority patients’ and families’ early, shared and informed consideration of LKT as treatment option. Our efforts to identify both shared and differing concerns about pursuing LKT among minority and nonminority patients and families represent a novel strategy for developing culturally sensitive interventions to improve consideration of LKT and could enhance interventions’ effectiveness. The TALK study has rigorously developed and is currently testing the effectiveness of culturally sensitive educational and behavioral interventions to improve patients’ and families’ early and informed consideration of LKT.
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