Feasibility and Acceptability of a Web-based Patient Education Curriculum for Cancer Survivors, Developed by Cancer Survivors from a Patient Engagement Event: A Program Evaluation
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Lynn Gauthier, Adam McDowall, Nazek Abdelmutti, Crystal Aultman, Audrey Friedman, Cheryl Pritlove and Beth Edwards.
Many patient education resources exist. However, hospital based patient education programs traditionally develop resources based on a request from healthcare providers, from a gap identified in the literature or in response to an unmet patient safety or accreditation-related need and therefore may not include information for managing disease in the context of everyday life. This means most patient education resources tend to focus on medical care, with significantly less attention paid to the social and contextual circumstances of the individual suffering with illness. Very little is known about the value of patient education resources produced by patients themselves. Given the potential benefits of peer support, a patient engagement event titled ""For Me, With Me"" was held at the Electronic Living Laboratory for Interdisciplinary Cancer Survivorship Research (ELLICSR) to help harness the intellectual capital of survivors and better understand how ""engagement"" is understood, defined, and practiced from their perspectives. This knowledge informed the content of a patient education web-based toolkit for cancer survivors. The purpose of this study is to determine the value of the web-based toolkit. To achieve this, there are 3 aims. Aim 1 is to determine curriculum quality using the validated Patient Education Material Assessment Tool (PEMAT) with multiple raters with varying degrees of expertise. We will also evaluate the reading level of the content using the SMOG readability score. Aim 2 is to assess factors associated with perceived utility and user satisfaction with the content of the toolkit through analysis of data collected from a survey. Aim 3 is to assess user experience and satisfaction with the web-based toolkit. This will be conducted through in-person usability testing that includes observation and open-ended question and answer. Overall, the study has important clinical, practical, and policy implications.