Assessment of the quality of existing patient educational tools focused on sudden cardiac arrest: a systematic evaluation by the Sudden Cardiac Arrest Thought Leadership Alliance

Garrett Hazelton,1 Sana M Al-Khatib,2,3 Gregg C Fonarow,4 Kevin L Thomas,3 David Hayes,5 Gillian D Sanders,2,3 Susan M Campbell,6 Clyde Yancy,7 Eric D Peterson,2,3 Samuel Sears8 1Department of Psychiatric Medicine, East Carolina University, Greenville, NC, 2Duke Clinical Research Institute, 3Department of Medicine, Duke University School of Medicine, Durham, NC, 4Division of Cardiology, Geffen School of Medicine at UCLA, Los Angeles, CA, 5Mayo Clinic, Rochester, MN, 6WomenHeart, The National Coalition for Women with Heart Disease, Washington, DC, 7Division of Cardiology, Feinburg School of Medicine, Northwestern University, Chicago, IL, 8Departments of Psychology and Cardiology, East Carolina University, Greenville, NC, USA Background: Conveying contemporary treatment options for those at risk of sudden cardiac arrest (SCA) is challenging. The purpose of the present research was to evaluate the quality and usability of available patient educational tools relevant to SCA and its treatment options, such as implantable cardioverter defibrillators (ICDs). We hypothesized that this review would identify gaps in areas of information for the enhancement of patient education and decision-making materials. Methods: We used a formal instrument to assess specific domains of content, development, and effectiveness of 18 available SCA and ICD educational tools. The multidisciplinary review panel included two electrophysiologists, two general cardiologists, a cardiac psychologist, a health services researcher, and a patient advocate. Results: Of the 18 education tools, four were rated as “good, may need revisions, but sufficient for use”, 12 were rated as “marginal, needs revision prior to use”, and two were rated as “poor, inadequate for use”. None of the tools were rated as being of “very good” or “excellent” quality. Conclusion: There appear to be opportunities to improve the quality and completeness of existing educational tools for patients with SCA and ICD. While many tools have been developed, they fall below current standards for supporting informed medical decision-making. Keywords: decision-making, implantable cardioverter defibrillators, patient-centered outcomes research