The providing resources to enhance African American patients' readiness to make decisions about kidney disease (PREPARED) study: protocol of a randomized controlled trial.

Abstract

BACKGROUND: Living related kidney transplantation (LRT) is underutilized, particularly among African Americans. The effectiveness of informational and financial interventions to enhance informed decision-making among African Americans with end stage renal disease (ESRD) and improve rates of LRT is unknown. METHODS/DESIGN: We report the protocol of the Providing Resources to Enhance African American Patients' Readiness to Make Decisions about Kidney Disease (PREPARED) Study, a two-phase study utilizing qualitative and quantitative research methods to design and test the effectiveness of informational (focused on shared decision-making) and financial interventions to overcome barriers to pursuit of LRT among African American patients and their families. Study Phase I involved the evidence-based development of informational materials as well as a financial intervention to enhance African American patients' and families' proficiency in shared decision-making regarding LRT. In Study Phase 2, we are currently conducting a randomized controlled trial in which patients with new-onset ESRD receive 1) usual dialysis care by their nephrologists, 2) the informational intervention (educational video and handbook), or 3) the informational intervention in addition to the option of participating in a live kidney donor financial assistance program. The primary outcome of the randomized controlled trial will include patients' self-reported rates of consideration of LRT (including family discussions of LRT, patient-physician discussions of LRT, and identification of a LRT donor). DISCUSSION: Results from the PREPARED study will provide needed evidence on ways to enhance the decision to pursue LRT among African American patients with ESRD.

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Provenance

Citation

Published Version (Please cite this version)

10.1186/1471-2369-13-135

Publication Info

Ephraim, Patti L, Neil R Powe, Hamid Rabb, Jessica Ameling, Priscilla Auguste, LaPricia Lewis-Boyer, Raquel C Greer, Deidra C Crews, et al. (2012). The providing resources to enhance African American patients' readiness to make decisions about kidney disease (PREPARED) study: protocol of a randomized controlled trial. BMC Nephrol, 13. p. 135. 10.1186/1471-2369-13-135 Retrieved from https://hdl.handle.net/10161/8335.

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Scholars@Duke

DePasquale

Nicole DePasquale

Assistant Professor in Medicine

Nicole DePasquale, PhD, is an Assistant Professor in Medicine in the Division of General Internal Medicine at the Duke University School of Medicine. She earned her PhD in Human Development and Family Studies from the Pennsylvania State University (2017), MSPH from the Johns Hopkins Bloomberg School of Public Health (2011), and BA in Communication with minors in Psychology and Sociology from Rutgers University (2010). Her research addresses questions about health, well-being, and multiple role management in the context of middle and late adulthood, with the ultimate aim of informing intervention efforts. She addresses these questions through two lines of research that utilize quantitative and qualitative methodology. One line examines the ways in which patients with chronic kidney disease and their family care partners work together to self-manage the disease and the impact dyadic self-management has on their health both as individuals and as a unit. The second line examines the work/nonwork interface of long-term care employees with family caregiving roles, or double- and triple-duty caregivers. Recent research includes patient-family discussions about living-donor kidney transplantation, decisional conflict regarding kidney failure treatment modalities, and the work and nonwork benefits of family-supportive supervisor behavior among double- and triple-duty caregiving men.

In April 2021, Dr. DePasquale received a K01 Career Development Award from NIA to fund her research project, “Supporting Patients and Care Partners to Manage Chronic Kidney Disease Together,” or The Shared Kidney Care Study. The Shared Kidney Care Study examine ways in which older adult-family care partner dyads appraise and manage CKD together and the impact dyadic management has on their health and well-being as individuals and as a whole. A year later, she became a 2022-2024 Pilot and Exploratory Studies Award (PESC) Scholar at the Duke Claude D. Pepper Older Americans Independence Center (Duke OAIC). The award, which begins on July 1, will fund her pilot study project, “Individual and Dyadic Factors Associated with Older Dialysis Patients’ Physical Resilience.” This pilot project serves as an add-on component to the Shared Kidney Care Study and expands the parent study’s existing strengths by adding a new and unique focus on physical resilience. It will examine how kidney failure dyads work together (or not) to maintain, regain, or optimize older patients’ physical function amid dialysis initiation and its negative downstream effects for patients and family care partners alike.

Dr. DePasquale is the recipient of the Springer Early Career Achievement Award in Research on Adult Development and Aging from Division 20: Adult Development & Aging of the American Psychological Association (APA). Prior to this, she secured a NIA-sponsored National Research Service Award (F31) to support her dissertation on the sleep implications of double- and triple-duty care, for which she received the Doctoral Dissertation Award in the Psychology of Aging from Division 20 of APA. She was also an NIA Butler-Williams Scholar. Since 2017, she has served in a leadership position for APA Division 20’s Early Career Task Force and was responsible for launching the Division’s Special Interest Groups (SIGs) initiative. Currently, she is assisting with projects on the NIA/NIH CARE IDEAS R01 study examining outcomes among persons with cognitive impairment and their family care partners.

Boulware

L. Ebony Boulware

Adjunct Professor in the Department of Medicine

Dr. Boulware is a general internist, physician-scientist and clinical epidemiologist focused on improving health and health equity for individuals and communities affected by chronic health conditions such as kidney disease. A national thought leader in health equity, she has identified patient, clinician, system, and community-level barriers that result in disparate outcomes for Black and other marginalized individuals. Using pragmatic trials, she has developed successful interventions, shaped guidelines, raised physician awareness and changed clinical practice.  Throughout her work, Dr. Boulware has sought to improve transparency and trustworthiness in science and medicine. 

Her research has been continuously funded by the National Institutes for Health, the Patient Centered Outcomes Research Institute, and other organizations throughout her career. She has published over 200 manuscripts, book chapters, and editorials, and she mentors numerous students, residents, fellows, and faculty members.  Dr. Boulware is an elected member of the American Society for Clinical Investigation, the Association of American Physicians, the National Academy of Medicine, and the American Academy of Arts and Sciences.

PubMed Listing Here (Link)

Education

  • A.B. Vassar College, 1991
  • M.D. Duke University, 1995
  • M.P.H. Johns Hopkins Bloomberg School of Public Health, 1999


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