Usability testing of the Internet program: “Teens Taking Charge: Managing My Transplant Online”

Abstract

Adolescents with SOT demonstrate high rates of medication non-adherence and higher rates of graft loss compared to all other age groups. Self-management interventions encompass information-based material designed to achieve disease-related learning and changes in the participant's knowledge and skill acquisition, while providing social support. These interventions have had some success in chronic disease populations by reducing symptoms and promoting self-efficacy and empowerment. Using findings from a needs assessment, an Internet-based self-management program, Teens Taking Charge: Managing My Transplant Online, for youth with SOT was developed. This program contains information on transplant, self-management and transition skills, and opportunities for peer support. The purpose of this study was to determine the usability and acceptability of the initial three modules (Medication and Vaccines; Diet after Transplant; and Living with a Transplant Organ) of the online program from the perspectives of youth with SOT. Participants were recruited from SOT clinics at a large pediatric tertiary care center in Canada. Three iterative cycles (seven patients per iteration) of usability testing took place to refine the Web site prototype. Study procedures involved participants finding items from a standardized list of features and talking aloud about issues they encountered, followed by a semi-structured interview to generate feedback about what they liked and disliked about the program. All 21 patients (mean age = 14.9 yr) found the Web site content to be trustworthy, they liked the picture content, and they found the videos of peer experiences to be particularly helpful. Participants had some difficulties finding information within submodules and suggested a more simplistic design with easier navigation. This web-based intervention is appealing to teenagers and may foster improved self-management with their SOT. Nine additional teen and two parent modules are being developed, and the completed Web site will undergo usability testing. In the future, a randomized control trial will determine the feasibility and effectiveness of this online self-management program on adherence, self-efficacy, and transition skills.

An assessment of the experiences and needs of adolescents with chronic conditions in transitional care: a qualitative study to develop a patient education programme

“…, Korus et al . ). The results of our study may not be representative of adolescents with chronic neurological or psychiatric conditions and warrant a thorough evaluation and possibly adaptations.…”

Usability of Health Information Websites Designed for Adolescents: Systematic Review, Neurodevelopmental Model, and Design Brief

“…In total, 9 studies did not provide enough information to calculate mean age [5,27,28,32,34,36,37,41,46], and 1 study only provided a median age [39]. Participants were recruited from a range of sources, including middle schools, secondary schools, specialist clinics, online, youth services, those who had participated in another study, and those who had already accessed the website.…”

“…Participants were recruited from a range of sources, including middle schools, secondary schools, specialist clinics, online, youth services, those who had participated in another study, and those who had already accessed the website. One study did not specify the location of recruitment [34].…”

“…The majority of studies evaluated health information websites that were designed for specific health topics for adolescents (see Table 2). These include health information websites dedicated to weight management [24], physical activity and diet [28,30], organ transplants [34], transition from pediatric to adult health care [27], diabetes [33,38,39], juvenile idiopathic arthritis [23,44,45], human papillomavirus [42], anxiety [46], hemophilia [25,26], HIV prevention [29], depression [40,41], chronic pain [35], migraines [31], and cancer [43]. Health information websites that were developed to give general information to adolescents included a combination of health topics such as mental health, diet, drugs and alcohol, contraception, and sleep patterns.…”

Transition from paediatric to adult ophthalmology services: what matters most to young people with visual impairment

“…4 A growing literature has identified the impact of a timely and successful transition in terms of secure disease-related knowledge, 5 high self-efficacy and good confidence for selfmanagement of health, 6 and assessed the effectiveness of technology-based systems and methods such as use of the internet and mobile phones to provide young people with access to transition-related information and increased control over their transition. [6][7][8] Formal transition processes are reported to achieve increased selfefficacy and transition preparedness, [6][7][8] fewer self-reported disease symptoms, 9 and better clinical outcomes. [10][11][12][13] Conversely, poor quality transitions have been associated with a 'dropout' of patients who become disengaged with their health care 14 and poor mental health and psychosocial outcomes.…”