Family perceptions of the usability and value of chronic disease web-based patient portals

Abstract

The objective of this study was to understand perceptions of the usability and value of web-based patient portals among parents of children with a chronic condition (diabetes, juvenile idiopathic arthritis, and cystic fibrosis). The design was a cross-sectional telephone survey with semistructured interviews and was conducted at a tertiary children’s hospital. Parent ratings of their experiences with and the value of a web-based portal and reasons for not using the portal were ascertained. Most parents agreed that the portal information was accurate, timely, and useful. Confidentiality and seeing worrisome health-related information about their child was not a major concern, and parents felt that the portal helped to improve their understanding of and ability to manage their child’s condition. In conclusion, the results of this study support the notion that web-based patient portals have the potential to be a useful tool for parents of children with a chronic disease.