title: Development and validation of a patient-centered knowledge scale for left ventricular assist device placement.
abstract: A central tenet of patient-centered health care advocated by the Institute of Medicine and the American Medical Association is to enhance informed decision-making in a way that incorporates patient values, knowledge and beliefs. Achievement of this goal is constrained by a lack of validated measures of patients' knowledge needs.
  
  
  
  In this study we present a comprehensive and valid methodology for developing a clinically informed and patient-centered measure of knowledge about left ventricular assist device (LVAD) therapy to facilitate discussion and measure candidate understanding of treatment options. Using structured interviews with patients, caregivers, candidates for LVAD treatment (New York Heart Association Class III and IV) and expert clinicians (n = 71), we identified top patient decisional needs and perspectives on essential knowledge needs for informed decision-making. From this list, we generated 20 knowledge scale question items to refine in cognitive interviews (n = 5) with patients and patient consultants.
  
  
  
  Good internal consistency and reliability of the knowledge scale (Cronbach's α = 0.81) was seen in 30 LVAD patients and candidates. Knowledge was higher among patients currently with LVADs than candidates, regardless of receiving standard education (with education: 69.9 vs 50.1, adjusted p = 0.02; without education: 69.9 vs 37.6, adjusted p < 0.001).
  
  
  
  The LVAD knowledge scale may be useful in clinical settings to identify gaps in knowledge among patient candidates considering LVAD treatment, and to better tailor education and discussion with patients and their caregivers, and to enhance informed decision-making before treatment decisions are made.
authors.affiliation: Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA. Electronic address: kristin.kostick@bcm.edu.
authors.forename: Kristin M
authors.initials: KM
authors.lastname: Kostick
authors.affiliation: Dan L. Duncan Institute for Clinical and Translational Research, Baylor College of Medicine, Houston, Texas, USA.
authors.forename: Charles G
authors.initials: CG
authors.lastname: Minard
authors.affiliation: Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA.
authors.forename: L A
authors.initials: LA
authors.lastname: Wilhelms
authors.affiliation: Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA.
authors.forename: Estevan
authors.initials: E
authors.lastname: Delgado
authors.affiliation: Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA.
authors.forename: Mackenzie
authors.initials: M
authors.lastname: Abraham
authors.affiliation: Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA.
authors.forename: Courtenay R
authors.initials: CR
authors.lastname: Bruce
authors.affiliation: DeBakey Heart and Vascular Center, Houston Methodist Hospital, Houston, Texas, USA.
authors.forename: Jerry D
authors.initials: JD
authors.lastname: Estep
authors.affiliation: Miami Transplant Institute, University of Miami, Miami, Florida, USA.
authors.forename: Matthias
authors.initials: M
authors.lastname: Loebe
authors.affiliation: Department of Health Services Research, MD Anderson Cancer Center, University of Texas, Houston, Texas, USA.
authors.forename: Robert J
authors.initials: RJ
authors.lastname: Volk
authors.affiliation: Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas, USA.
authors.forename: J S
authors.initials: JS
authors.lastname: Blumenthal-Barby
mesh_terms: D017028:Caregivers; D003657:Decision Making; D006333:Heart Failure; D006353:Heart-Assist Devices; D006801:Humans; D015203:Reproducibility of Results
keywords: CV surgery; cardiology; cardiomyopathy; heart failure; transplantation; ventricular assistance