Selecting renal replacement therapies: what do African American and non-African American patients and their families think others should know? A mixed methods study.
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2013-01-14
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BACKGROUND: Little is known regarding the types of information African American and non-African American patients with chronic kidney disease (CKD) and their families need to inform renal replacement therapy (RRT) decisions. METHODS: In 20 structured group interviews, we elicited views of African American and non-African American patients with CKD and their families about factors that should be addressed in educational materials informing patients' RRT selection decisions. We asked participants to select factors from a list and obtained their open-ended feedback. RESULTS: Ten groups of patients (5 African American, 5 non-African American; total 68 individuals) and ten groups of family members (5 African American, 5 non-African American; total 62 individuals) participated. Patients and families had a range (none to extensive) of experiences with various RRTs. Patients identified morbidity or mortality, autonomy, treatment delivery, and symptoms as important factors to address. Family members identified similar factors but also cited the effects of RRT decisions on patients' psychological well-being and finances. Views of African American and non-African American participants were largely similar. CONCLUSIONS: Educational resources addressing the influence of RRT selection on patients' morbidity and mortality, autonomy, treatment delivery, and symptoms could help patients and their families select RRT options closely aligned with their values. Including information about the influence of RRT selection on patients' personal relationships and finances could enhance resources' cultural relevance for African Americans.
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DePasquale, Nicole, Patti L Ephraim, Jessica Ameling, Lapricia Lewis-Boyér, Deidra C Crews, Raquel C Greer, Hamid Rabb, Neil R Powe, et al. (2013). Selecting renal replacement therapies: what do African American and non-African American patients and their families think others should know? A mixed methods study. BMC Nephrol, 14. p. 9. 10.1186/1471-2369-14-9 Retrieved from https://hdl.handle.net/10161/8330.
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Nicole DePasquale
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.
L. Ebony Boulware
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.
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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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