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

Jessica M. Ameling, Priscilla Auguste, Patti L Ephraim, LaPricia Lewis-Boyer, Nicole DePasquale, Raquel Charles Greer, Deidra Crews, Neil R. Powe, Hamid Rabb, Leigh Boulware

Research output: Contribution to journalArticle

Abstract

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. 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. 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. 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.

Original languageEnglish (US)
Pages (from-to)140
Number of pages1
JournalBMC Medical Informatics and Decision Making
Volume12
DOIs
StatePublished - 2012
Externally publishedYes

Fingerprint

Renal Replacement Therapy
Decision Support Techniques
Therapeutics
Chronic Kidney Failure
Health Literacy
Health
Focus Groups
Health Personnel

ASJC Scopus subject areas

  • Health Informatics
  • Health Policy

Cite this

Development of a decision aid to inform patients' and families' renal replacement therapy selection decisions. / Ameling, Jessica M.; Auguste, Priscilla; Ephraim, Patti L; Lewis-Boyer, LaPricia; DePasquale, Nicole; Greer, Raquel Charles; Crews, Deidra; Powe, Neil R.; Rabb, Hamid; Boulware, Leigh.

In: BMC Medical Informatics and Decision Making, Vol. 12, 2012, p. 140.

Research output: Contribution to journalArticle

@article{27bc85eeb9724b7691d225d8052a388f,
title = "Development of a decision aid to inform patients' and families' renal replacement therapy selection decisions.",
abstract = "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. 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. 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. 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.",
author = "Ameling, {Jessica M.} and Priscilla Auguste and Ephraim, {Patti L} and LaPricia Lewis-Boyer and Nicole DePasquale and Greer, {Raquel Charles} and Deidra Crews and Powe, {Neil R.} and Hamid Rabb and Leigh Boulware",
year = "2012",
doi = "10.1186/1472-6947-12-140",
language = "English (US)",
volume = "12",
pages = "140",
journal = "BMC Medical Informatics and Decision Making",
issn = "1472-6947",
publisher = "BioMed Central",

}

TY - JOUR

T1 - Development of a decision aid to inform patients' and families' renal replacement therapy selection decisions.

AU - Ameling, Jessica M.

AU - Auguste, Priscilla

AU - Ephraim, Patti L

AU - Lewis-Boyer, LaPricia

AU - DePasquale, Nicole

AU - Greer, Raquel Charles

AU - Crews, Deidra

AU - Powe, Neil R.

AU - Rabb, Hamid

AU - Boulware, Leigh

PY - 2012

Y1 - 2012

N2 - 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. 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. 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. 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.

AB - 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. 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. 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. 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.

UR - http://www.scopus.com/inward/record.url?scp=84870169654&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84870169654&partnerID=8YFLogxK

U2 - 10.1186/1472-6947-12-140

DO - 10.1186/1472-6947-12-140

M3 - Article

C2 - 23198793

AN - SCOPUS:84870169654

VL - 12

SP - 140

JO - BMC Medical Informatics and Decision Making

JF - BMC Medical Informatics and Decision Making

SN - 1472-6947

ER -