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Open Access Research article

Development of a decision aid to inform patients’ and families’ renal replacement therapy selection decisions

Jessica M Ameling12, Priscilla Auguste12, Patti L Ephraim13, LaPricia Lewis-Boyer12, Nicole DePasquale12, Raquel C Greer12, Deidra C Crews14, Neil R Powe5, Hamid Rabb4 and L Ebony Boulware123*

Author Affiliations

1 Welch Center for Prevention, Epidemiology and Clinical Research, Johns Hopkins Medical Institutions, Baltimore, Maryland, USA

2 Division of General Internal Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA

3 Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, USA

4 Division of Nephrology, Johns Hopkins Medical Institutions, Baltimore, Maryland, USA

5 Department of Medicine, University of California San Francisco and San Francisco General Hospital, San Francisco, California, USA

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BMC Medical Informatics and Decision Making 2012, 12:140  doi:10.1186/1472-6947-12-140

Published: 1 December 2012

Abstract

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.

Keywords:
Kidney disease; Decision aid; Literacy; Numeracy; Cognitive function