Jennifer Stinson*, The Hospital for Sick Children, Toronto, Canada Lindsay Jibb*, University of Toronto, Toronto, Canada Abha Gupta, Hospital for Sick Children, Toronto, Canada France Dupuis, University of Montreal, Montreal, Canada Bruce Dick, University of Alberta, Edmonton, Canada Caroline Laverdiere, Sainte-Justine University Hospital Research Centre, Montreal, Canada Sylvie Le May, Sainte-Justine University Hospital Research Centre, Montreal, Canada Lillian Sung, Hospital for Sick Children, Toronto, Canada Elizabeth Dettmer, Hospital for Sick Children, Toronto, Canada Stephanie Gomer, Hospital for Sick Children, Toronto, Canada Janie Lober, McGill University, Montreal, Canada Carol Chan, St. Michael's Hospital, Toronto, Canada Track: Research Presentation Topic: e-Coaching Presentation Type: Poster presentation Submission Type: Single Presentation Last modified: 2014-05-28

If you are the presenter of this abstract (or if you cite this abstract in a talk or on a poster), please show the QR code in your slide or poster (QR code contains this URL).

Background: Cancer is the most common potentially fatal disease of adolescence. Disease management is often complex, involving diverse therapies over long periods of time that require frequent monitoring. The Internet represents an ideal means to deliver education, self-monitoring capabilities, and social support to enhance disease self-management by adolescents with cancer. In response, the bilingual (English and French) "Teens Taking Charge: Managing Cancer Online" Internet-based self-management program for adolescents with cancer and their parents was developed following a needs assessment with adolescents, parents, and healthcare providers.

Objective: The goal of this study was to utilize a user-centered design approach to refine the Internet-based cancer self-management program to ensure that is acceptable, understandable and easy to navigate for adolescents and their parents.

Methods: Two iterative cycles of qualitative, audio-recorded usability testing involving user observation and followed by semi-structured interviews were used to refine the intervention. A purposive sample of English-speaking (Cycle 1: n=6, mean age=16.0 years, SD=2.0; Cycle 2: n=6, mean age: 14.0 years, SD=2.0) and French-speaking (Cycle 1: n=6, mean age=15.7, SD=1.0; Cycle 2: n=4; mean age=16.8, SD=1.5) adolescents with cancer and one of their parents were recruited from two large pediatric tertiary care centers. Sample size was set according to the number of adolescents needed to reach qualitative data saturation in each cycle of testing. Participants completed demographic questionnaires and reported their perceived comfort using the Internet. A brief demonstration of the intervention was provided and participants were asked to use the website while “thinking aloud” about specific issues encountered with the user interface and content areas. A trained observer recorded difficulties and navigation errors. Finally, participants were asked a series of open-ended questions addressing their experience with the website and recommendations for improvement. Audio-recorded data were transcribed verbatim. French interviews were transcribed into English by a bilingual transcriptionist. Qualitative content analysis of audio-recorded data and observer field-notes was used to capture emergent themes related to intervention usability.

Results: All participants had access to a computer and Internet at home and reported being ‘comfortable’ or ‘very comfortable’ using the Internet. Testing with both adolescents and parents provided similar results on needed intervention changes. There were no major differences in the usability of the French and English versions. Overall, all participants liked the aesthetics of the website and its content. Both groups also reported finding the information presented on the website to be appropriate, credible, and relevant to their cancer treatment experiences. Usability issues were identified after Cycle 1 of English and French testing. Specifically, site (1) aesthetics (i.e., recommendation to eliminate ‘blank-spaces’ on pages), (2) navigation tools, and (3) the translation from English to French needed minor changes. Changes were made and no new issues were identified following the second phase of either French or English testing.

Conclusions: The multifaceted usability approach utilized provided important insight into how Internet-based self-management programs can be made more amenable to adolescents with cancer (i.e., through altering aesthetics, navigation and language use). Next steps will include feasibility testing of the intervention before ultimately testing effectiveness in a multicenter randomized controlled trial. It is expected that an acceptable, trusted and cultural competent Internet self-management intervention will improve care delivery and health outcomes for adolescents with cancer.