Internet-based Educational Program to Promote Self-Management for Teens With Hemophilia
Condition: Hemophilia A
MeSH terms: Hemophilia A
Study type: Interventional

Summary: 
      In summary, there is a clear need to improve knowledge and self-management skills in
      adolescents with hemophilia. To date, there are no published accounts of self-management
      programs for this population. Evidence from other chronic diseases that affects teens
      suggests that by developing an interactive Internet-based program, the investigators can meet
      the educational needs of adolescents with hemophilia and improve their ability to manage
      their hemophilia. In the long-term, improved self-management should result in a smoother and
      more successful transition to adult care and improve patient outcomes.
    

Detailed description: 
      The overall aim of this program of research is to develop and evaluate the "Teens Taking
      Charge: Managing Hemophilia Online" Internet intervention that will help adolescents with
      hemophilia to better understand and manage their disease independently. This program is
      modeled after Dr. Stinson's similar successful internet self-management program developed for
      youth with arthritis.

      This program is being developed and evaluated using a sequential, phased approach. The first
      phase of this project has determined the self-management and transitional care needs of
      adolescents with hemophilia. Currently, in Phase 2A, we are developing the website with the
      content based on the findings from the Phase 1 needs assessment. We propose the current study
      to conduct usability testing (Phase 2B) to make sure it is easy to use and understand, and is
      efficient and satisfying to complete. Subsequently, we will assess the feasibility of the
      program and the outcomes from the use of the site in a randomized controlled trial (RCT)
      pilot study (Phase 3). This will enable us to determine an appropriate sample size for the
      future mixed controlled trial. Phases 2B and 3 are the focus of this proposal. Phase 4 will
      be a multicentre randomized controlled trial to assess outcomes for teens that complete the
      intervention as compared to those of an attention control group. This randomized controlled
      trial controlled trial will include all interested pediatric hemophilia treatment centres
      across Canada.

      We hypothesize that adolescents with hemophilia who complete the "Teens Taking Charge:
      Managing Hemophilia Online" Internet intervention will demonstrate: increased hemophilia
      specific knowledge, increased self-efficacy, improved health-related quality of life (HRQL)
      and decreased stress prior to transition to adult health care.
    

Intervention name(s): Teens Taking Charge: Managing Hemophilia Online- Online self-management intervention
Intervention type(s): Other
Intervention description(s): The content will be delivered on a password-protected website, as part of the "About Kids Health" interface developed and maintained at the Hospital for Sick Children, Toronto, Canada. The website has been developed as eight discrete educational modules for adolescents. Each module takes approximately 30 to 45 minutes to complete. Content has been written and reviewed by experts from comprehensive hemophilia care clinics across Canada (physicians, nurses, physiotherapists and social workers) and edited by a medical writer to ensure that it is written at the suggested grade 6 reading level for patient education materials. Content has been written in English and will be translated into French prior to program launch. The format is geared towards adolescents and includes narratives with video components and interactive illustrations. In addition, each module will have quiz questions with real-time feedback to promote interactivity and knowledge retention.
Allocation: Randomized
Intervention model: Parallel Assignment
Masking: Single (Participant)
Primary purpose: Supportive Care
Keywords: teens; adolescents; Internet intervention; Hemophilia