Effectiveness of educational and social worker interventions to activate patients' discussion and pursuit of preemptive living donor kidney transplantation: a randomized controlled trial.

BACKGROUND: Many patients with chronic kidney disease (CKD) have difficulty becoming actively engaged in the pursuit of preemptive living donor kidney transplantation. STUDY DESIGN: The Talking About Live Kidney Donation (TALK) Study was a randomized controlled trial of the effectiveness of educational and social worker interventions designed to encourage early discussions and active pursuit of preemptive living donor kidney transplantation in patients with progressive CKD. SETTING & PARTICIPANTS: We recruited participants with progressive CKD from academically affiliated nephrology practices in Baltimore, MD. INTERVENTION: Participants randomly received: (1) usual care (routine care with their nephrologists), the (2) TALK education intervention (video and booklet), or the (3) TALK social worker intervention (video and booklet plus patient and family social worker visits). OUTCOMES: We followed participants for 6 months to assess their self-reported achievement of behaviors reflecting their discussions about and/or pursuit of living donor kidney transplantation (discussions with family, discussions with physicians, initiating recipient evaluation, completing recipient evaluation, and identifying a potential living donor). MEASUREMENTS: We assessed outcomes through a questionnaire at 1-, 3-, and 6-months follow-up. RESULTS: Participants receiving usual care with their nephrologists (n = 44), TALK education (n = 43), and the TALK social worker (n = 43) were similar at baseline. TALK Study interventions improved participants' living donor kidney transplantation discussion and pursuit behaviors, with the social worker leading to greater patient activation (participants' predicted probability of achieving living donor kidney transplantation discussions, evaluations, or donor identification over 6 months): probabilities were 30% (95% CI, 20%-46%), 42% (95% CI, 33%-54%), and 58% (95% CI, 41%-83%), respectively, in the usual care, TALK education, and TALK social worker groups (P = 0.03). LIMITATIONS: Our population was well educated and mostly insured, potentially limiting generalizability of our findings. CONCLUSIONS: TALK interventions improved discussion and active pursuit of living donor kidney transplantation in patients with progressive CKD and may improve their use of preemptive living donor kidney transplantation.

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.

BACKGROUND: Live 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/DESIGN: We 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. DISCUSSION: The 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 REGISTRATION: ClinicalTrials.gov number, NCT00932334.

Identifying and addressing barriers to African American and non-African American families' discussions about preemptive living related kidney transplantation.

CONTEXT: Ethnic/racial minority and nonminority families' perceived barriers to discussing preemptive living related kidney transplantation (LRKT) and their views on the potential value of health care professionals trained to address barriers are unknown. OBJECTIVE, SETTING, AND PARTICIPANTS: To collect pilot data for evaluating perceived barriers to preemptive LRKT and to inform the development of a culturally sensitive intervention to improve families' consideration of LRKT. In 4 structured group interviews of African American and non-African American patients (2 groups) with progressing chronic kidney disease and their family members (2 groups), participants' perceived barriers to initiating LRKT discussions and their views regarding the value of social workers to support discussions were explored. RESULTS: Patients' barriers included concerns about their (1) ability to initiate discussions, (2) discussions being misinterpreted as donation requests, (3) potential burdening of family members, (4) uncertainty about when to initiate discussions, and (5) inducing guilt or coercing family members. Family members' barriers included (1) feeling overwhelmed by patients' illness, (2) patients' denial about their illness, (3) caregiver stress, and (4) uncertainty about their own health or the health of other family members who might donate or need a kidney in the future. Participants reported that social workers could facilitate difficult or awkward discussions and help families understand the LRKT process, address financial concerns, and cope emotionally. Themes were similar between African Americans and non-African Americans. CONCLUSIONS: Families identified several barriers to discussing preemptive LRKT that could be addressed by social workers. Further research must be done to determine whether social workers need to tailor interventions to address families' cultural differences.