The TALKS study to improve communication, logistical, and financial barriers to live donor kidney transplantation in African Americans: protocol of a randomized clinical trial.

BACKGROUND: Live donor kidney transplantation (LDKT), an optimal therapy for many patients with end-stage kidney disease, is underutilized, particularly by African Americans. Potential recipient difficulties initiating and sustaining conversations about LDKT, identifying willing and medically eligible donors, and potential donors' logistical and financial hurdles have been cited as potential contributors to race disparities in LDKT. Few interventions specifically targeting these factors have been tested. METHODS/DESIGN: We report the protocol of the Talking about Living Kidney Donation Support (TALKS) study, a study designed to evaluate the effectiveness of behavioral, educational and financial assistance interventions to improve access to LDKT among African Americans on the deceased donor kidney transplant recipient waiting list. We adapted a previously tested educational and social worker intervention shown to improve consideration and pursuit of LDKT among patients and their family members for its use among patients on the kidney transplant waiting list. We also developed a financial assistance intervention to help potential donors overcome logistical and financial challenges they might face during the pursuit of live kidney donation. We will evaluate the effectiveness of these interventions by conducting a randomized controlled trial in which patients on the deceased donor waiting list receive 1) usual care while on the transplant waiting list, 2) the educational and social worker intervention, or 3) the educational and social worker intervention plus the option of participating in the financial assistance program. The primary outcome of the randomized controlled trial will measure potential recipients' live kidney donor activation (a composite rate of live donor inquiries, completed new live donor evaluations, or live kidney donation) at 1 year. DISCUSSION: The TALKS study will rigorously assess the effectiveness of promising interventions to reduce race disparities in LDKT. TRIAL REGISTRATION: NCT02369354.

Cancer support and resource needs among African American older adults

Older African Americans face substantial barriers to state-of-the-art cancer care. Implementing culturally appropriate support throughout cancer therapy is critical to improving cancer outcomes and quality of life for this vulnerable population. The purpose of this study was to obtain experiential data regarding cancer diagnosis and treatment, and analyze survivors' recommendations regarding treatment-related needs, psychosocial support, and strategies and resources. Four main issues emerged from the study: (a) the need for more health-related and cancer-specific education, (b) the importance of faith and spirituality, (c) the availability of support, and (d) participants' difficulty identifying and articulating financial needs. Few participants reported requesting or receiving assistance (financial or otherwise) outside of the family during their cancer experience. However, treatment-related medication costs posed a significant hardship for many.

Feasibility and acceptability of the TALK social worker intervention to improve live kidney transplantation.

Live kidney transplantation (LKT) is underused by patients with end-stage renal disease. Easily implementable and effective interventions to improve patients' early consideration of LKT are needed. The Talking About Live Kidney Donation (TALK) social worker intervention (SWI) improved consideration and pursuit of LKT among patients with progressive chronic kidney disease in a recent randomized controlled trial: Patients and their families were invited to meet twice with a social worker to discuss their self-identified barriers to seeking LKT and to identify solutions to barriers. The authors audio recorded and transcribed all social worker visits to assess implementation of the TALK SWI and its acceptability to patients and families. The study social worker adhered to the TALK SWI protocol more than 90 percent of the time. Patients and families discussed medical (for example, long-term risks of transplant), psychological (for example, patients' denial of the severity of their disease), and economic (for example, impact of donation on family finances) concerns regarding LKT. Most patients and families felt that the intervention was helpful. Consistently high adherence to the TALK SWI protocol and acceptability of the intervention among patients and families suggest that the TALK SWI can be feasibly implemented in clinical practice.