Development of a decision aid to inform patients' and families' renal replacement therapy selection decisions.
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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.
Aged, 80 and over
Decision Support Techniques
Patient Education as Topic
Renal Replacement Therapy
Published Version (Please cite this version)10.1186/1472-6947-12-140
Publication InfoAmeling, Jessica M; Auguste, Priscilla; Ephraim, Patti L; Lewis-Boyer, LaPricia; DePasquale, Nicole; Greer, Raquel C; ... Boulware, L Ebony (2012). Development of a decision aid to inform patients' and families' renal replacement therapy selection decisions. BMC Med Inform Decis Mak, 12. pp. 140. 10.1186/1472-6947-12-140. Retrieved from https://hdl.handle.net/10161/8328.
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Eleanor Easley Distinguished Professor in the School of Medicine
Dr. Boulware is the Eleanor Easley Distinguished Professor in the Duke University School of Medicine. She serves as Chief of the Division of General Internal Medicine in the Department of Medicine, Vice Dean for Translational Science, and Associate Vice Chancellor for Translational Research at Duke. She is a general internist and clinical epidemiologist. She studies mechanisms to improve the quality and equity of health care and health outcomes for individuals and populations affected by chro
Assistant Professor in Medicine
I am a social/health psychologist with training in psychology, sociology, and communication (BA, Rutgers University); public health (MSPH, Johns Hopkins Bloomberg School of Public Health); and human development and family studies (PhD, The Pennsylvania State University). I have two lines of research that aim to improve the health, well-being, and family relationships of caregivers in the context of middle and late adulthood. The first focuses on the work/nonwork interface of long-
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