Abstract
BackgroundAs adolescents with hemophilia approach adulthood, they are expected to assume responsibility for their disease management. A bilingual (English and French) Internet-based self-management program, “Teens Taking Charge: Managing Hemophilia Online,” was developed to support adolescents with hemophilia in this transition. This study explored the usability of the website and resulted in refinement of the prototype.MethodsA purposive sample (n=18; age 13–18; mean age 15.5 years) was recruited from two tertiary care centers to assess the usability of the program in English and French. Qualitative observations using a “think aloud” usability testing method and semi-structured interviews were conducted in four iterative cycles, with changes to the prototype made as necessary following each cycle. This study was approved by research ethics boards at each site.ResultsTeens responded positively to the content and appearance of the website and felt that it was easy to navigate and understand. The multimedia components (videos, animations, quizzes) were felt to enrich the experience. Changes to the presentation of content and the website user-interface were made after the first, second and third cycles of testing in English. Cycle four did not result in any further changes.ConclusionsOverall, teens found the website to be easy to use. Usability testing identified end-user concerns that informed improvements to the program. Usability testing is a crucial step in the development of Internet-based self-management programs to ensure information is delivered in a manner that is accessible and understood by users.
Highlights
As adolescents with hemophilia approach adulthood, they are expected to assume responsibility for their disease management
We developed an online intervention to meet the educational needs of adolescents with hemophilia (AWH), modeled after a similar online educational program for teens with juvenile idiopathic arthritis [7]
This study illustrates the integral role of usability testing in the development of Internet-based health interventions and provides preliminary support for “Teens Taking Charge: Managing Hemophilia Online.”
Summary
As adolescents with hemophilia approach adulthood, they are expected to assume responsibility for their disease management. Hemophilia is a bleeding disorder that results from a deficiency of coagulation factor VIII (Hemophilia A) or IX (Hemophilia B) [1]. It is treated with intravenously administered replacement factor that is often given at home. Individuals with hemophilia often bleed into joints and muscles, necessitating additional infusions, pain management and rehabilitation. Like teens with other chronic conditions, adolescents with hemophilia (AWH) must become competent in managing their disease. A recent study showed that at a median age of 17.2 years, almost 25% of AWH still required parental assistance in hemophilia-related care [3]. It is essential that health care providers find effective means of filling knowledge gaps and encouraging the development of selfmanagement skills in adolescents with chronic illnesses
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