Smart-web support: a new tool to help information sharing in managing complex paediatric diseases. Study protocol.

Abstract

As devices for learning, smart-web support (SWS) multimedia hypertexts on the web now provide more versatile and interactive reading systems than those traditionally available in static printed texts. Designing similar tools for clinical practice would make complex scientific information easier to comprehend, and present the various therapeutic options to patients as minimally alarming graphical representations. In a pilot project we intend to produce a SWS tool for parents or tutors of children with primary differentiated thyroid cancer (DTC), a heretofore rare disease whose incidence has increased over recent years. The SWS hypertexts, "pre-digested" by the multidisciplinary team caring for these children, will be inserted in a single web page (canvas) including shared sheets explaining the best surgical options (decision aids). To make evidence-based information easier to understand and help information sharing, the decision aids will combine text and graphics. The canvas will store data for the multimedia files in a cloud storage system, opened via a link. To measure parents' and tutors' understanding and appreciation of the information provided on the web, the canvas will include questionnaires to investigate satisfaction, eventual barrier encountered, and type of surgical therapy chosen. The SWS tool should allow users to obtain all the information in a relatively short time and improve parents' and children's satisfaction with the surgical options proposed. The results obtained will be useful for developing similar SWS devices for other complex paediatric diseases.