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

Area of Science:

• Medical Informatics
• Pediatric Oncology
• Health Communication

Background:

• Traditional printed texts offer limited interactivity for complex medical information.
• Smart-web support (SWS) multimedia hypertexts provide versatile and interactive learning systems.
• Accessible information is crucial for patients and families navigating complex diagnoses like differentiated thyroid cancer (DTC).

Purpose of the Study:

• To develop and pilot a SWS tool for parents/guardians of children diagnosed with primary differentiated thyroid cancer (DTC).
• To present complex scientific and therapeutic information in an easily comprehensible format using "pre-digested" hypertexts and graphical decision aids.
• To evaluate user satisfaction, identify barriers, and understand treatment choices related to the SWS tool.

Main Methods:

• Creation of a single web page (canvas) integrating SWS hypertexts and decision aids for DTC surgical options.
• Utilizing cloud storage for multimedia file data, accessible via a link.
• Incorporating questionnaires within the canvas to assess user understanding, satisfaction, and decision-making.

Main Results:

• The SWS tool aims to facilitate rapid access to comprehensive information.
• It is designed to enhance patient and caregiver satisfaction with proposed surgical interventions.
• The pilot project's findings will inform the development of similar tools for other complex pediatric diseases.

Conclusions:

• SWS tools can significantly improve comprehension and accessibility of complex medical information for families.
• This approach has the potential to enhance shared decision-making and patient satisfaction in pediatric oncology.
• The developed SWS tool serves as a model for creating similar digital health resources for various pediatric conditions.