Development of a decision aid to inform patients' and families' renal replacement therapy selection decisions.
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2012-12-01
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BACKGROUND: Few educational resources have been developed to inform patients' renal replacement therapy (RRT) selection decisions. Patients progressing toward end stage renal disease (ESRD) must decide among multiple treatment options with varying characteristics. Complex information about treatments must be adequately conveyed to patients with different educational backgrounds and informational needs. Decisions about treatment options also require family input, as families often participate in patients' treatment and support patients' decisions. We describe the development, design, and preliminary evaluation of an informational, evidence-based, and patient-and family-centered decision aid for patients with ESRD and varying levels of health literacy, health numeracy, and cognitive function. METHODS: We designed a decision aid comprising a complementary video and informational handbook. We based our development process on data previously obtained from qualitative focus groups and systematic literature reviews. We simultaneously developed the video and handbook in "stages." For the video, stages included (1) directed interviews with culturally appropriate patients and families and preliminary script development, (2) video production, and (3) screening the video with patients and their families. For the handbook, stages comprised (1) preliminary content design, (2) a mixed-methods pilot study among diverse patients to assess comprehension of handbook material, and (3) screening the handbook with patients and their families. RESULTS: The video and handbook both addressed potential benefits and trade-offs of treatment selections. The 50-minute video consisted of demographically diverse patients and their families describing their positive and negative experiences with selecting a treatment option. The video also incorporated health professionals' testimonials regarding various considerations that might influence patients' and families' treatment selections. The handbook was comprised of written words, pictures of patients and health care providers, and diagrams describing the findings and quality of scientific studies comparing treatments. The handbook text was written at a 4th to 6th grade reading level. Pilot study results demonstrated that a majority of patients could understand information presented in the handbook. Patient and families screening the nearly completed video and handbook reviewed the materials favorably. CONCLUSIONS: This rigorously designed decision aid may help patients and families make informed decisions about their treatment options for RRT that are well aligned with their values.
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Ameling, Jessica M, Priscilla Auguste, Patti L Ephraim, LaPricia Lewis-Boyer, Nicole DePasquale, Raquel C Greer, Deidra C Crews, Neil R Powe, et al. (2012). Development of a decision aid to inform patients' and families' renal replacement therapy selection decisions. BMC Med Inform Decis Mak, 12. p. 140. 10.1186/1472-6947-12-140 Retrieved from https://hdl.handle.net/10161/8328.
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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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