TitleDevelopment of a decision aid to inform patients' and families' renal replacement therapy selection decisions.
Publication TypeJournal Article
Year of Publication2012
AuthorsAmeling, JM, Auguste, P, Ephraim, PL, Lewis-Boyer, LP, DePasquale, N, Greer, RC, Crews, DC, Powe, NR, Rabb, H, L Boulware, E
JournalBMC Med Inform Decis Mak
Volume12
Pagination140
Date Published2012 Dec 01
ISSN1472-6947
KeywordsAdult, Aged, Aged, 80 and over, Baltimore, Choice Behavior, Decision Support Techniques, Female, Humans, Male, Middle Aged, Pamphlets, Patient Education as Topic, Patient Participation, Patient Satisfaction, Pilot Projects, Renal Replacement Therapy, Video Recording
Abstract

<p><b>BACKGROUND: </b>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.</p><p><b>METHODS: </b>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.</p><p><b>RESULTS: </b>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.</p><p><b>CONCLUSIONS: </b>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.</p>

DOI10.1186/1472-6947-12-140
Alternate JournalBMC Med Inform Decis Mak
PubMed ID23198793
PubMed Central IDPMC3560257
Grant List3R01DK079682-03S1 / DK / NIDDK NIH HHS / United States
K23 DK094975 / DK / NIDDK NIH HHS / United States
R01DK079682 / DK / NIDDK NIH HHS / United States
K240502643 / / PHS HHS / United States
5KL2RR025006 / RR / NCRR NIH HHS / United States
K23DK070757 / DK / NIDDK NIH HHS / United States