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Aging and its effect on bone remodeling is the most common cause of bone disorders. In young and healthy people, bone deposition and resorption happen at an equal rate to maintain optimal bone health.
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Secondary healthcare is offered by a specialist, generally in hospitals or clinics for patients referred by primary healthcare providers. It occurs when a person has an illness or injury that requires specific medical care. Secondary care is often referred to as acute care. Secondary care can range from uncomplicated care to repair a minor laceration or treat a strep throat infection to more complicated emergent care, such as treating a head injury sustained in an automobile accident. Whatever...
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The Design, Development, and Usability Testing of an eHealth Program for Youths With Osteogenesis Imperfecta:

Argerie Tsimicalis1, Jennifer Stinson2, Kelly Thorstad1

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Summary
This summary is machine-generated.

This study develops "Teens OI," an eHealth program to help youth with osteogenesis imperfecta (OI) manage their condition and transition to adult care. It prioritizes mental health, pain, and accessibility, aiming to improve quality of life.

Keywords:
eHealth programosteogenesis imperfectaself-managementtransition of careyouth

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Area of Science:

  • Health Informatics
  • Digital Health
  • Patient Self-Management

Background:

  • Osteogenesis imperfecta (OI) requires innovative self-management strategies for adolescents transitioning to adult healthcare.
  • Existing healthcare systems often lack tailored support for youths with OI during this critical transition phase.
  • An eHealth program can bridge this gap, optimizing self-management and improving care quality for young individuals with OI.

Purpose of the Study:

  • To design and develop an eHealth program,
  • Teens Taking Charge: Managing OI Online
  • (Teens OI), in English and French versions.
  • To evaluate the usability of the Teens OI program, assessing efficiency, effectiveness, and user satisfaction among youths with OI and their parents.

Main Methods:

  • A user-centered design approach is employed for the development of the Teens OI program.
  • A Website Design and Development Council, including youths with OI and parents, guides the program's creation.
  • Usability testing will be conducted in four iterative cycles with youth-parent dyads, with data analyzed using descriptive statistics and content analysis.

Main Results:

  • An interdisciplinary council, including healthcare professionals, youths with OI, and parents, has been established to guide development.
  • Preliminary analyses from interviews highlight key areas for prioritization: mental health, pain management, accessibility, medical care, education, community integration, and parental support.
  • Content development is nearing completion, with usability testing ethically approved and set to commence.

Conclusions:

  • The Teens OI program, co-designed with patients and professionals, aims to empower youths with OI in managing their lifelong condition.
  • Leveraging eHealth technology, the program is expected to enhance self-management skills and facilitate a smoother transition to adult healthcare.
  • This initiative addresses a critical gap in care quality, mitigating risks associated with the transition for the OI population.