Cancer Resource and Information Support (CRIS) for Bladder Cancer Survivors and Their Caregivers: Development and Usability Testing Study

• Published in: JMIR formative research 2023-06, Vol.7, p.e41876-e41876
• Main Authors: Diefenbach, Michael A, Marziliano, Allison, Siembida, Elizabeth J, Mistretta, Thomas, Pfister, Halie, Yacoub, Andrea, Aibel, Kelli, Patel, Priya, Lapitan, Emmanuel, Tagai, Erin K, Smaldone, Marc, Miller, Suzanne M
• Format: Article
• Language: English
• Subjects: Adjustment; Americans with Disabilities Act 1990-US; Behavior modification; Bladder cancer; Cancer therapies; Caregivers; Drug development; Obesity; Original Paper; Ostomy; Patients; Recovery (Medical); Software; Surgeons; Survivor; Terminology; Urological surgery; Usability testing
• ISSN: 2561-326X; 2561-326X
• DOI: 10.2196/41876

Bladder cancer survivors and their caregivers face profound practical (eg, use of stoma appliances and care for urinary diversion methods) and psychosocial (eg, depression and anxiety) challenges after surgical treatment with cystectomy. To improve the health-related quality of life and postsurgical outcomes of both bladder cancer survivors and their caregivers, the team, in collaboration with Sourcetop, Inc (software design) and Dappersmith (graphic design), developed the Cancer Resource and Information Support (CRIS) software. The purpose of this manuscript is to report on the development and usability testing of the CRIS software. The development of the CRIS software was guided by the Obesity-Related Behavioral Intervention Trials (ORBIT) model for developing behavioral treatments for chronic diseases. The ORBIT model is unique in that it proposes a flexible and progressive process with prespecific clinically significant milestones for forward movement and returns to earlier stages for refinement, and it facilitates communication among diverse groups by using terminology from the drug development model. This paper focuses on 2 phases of the ORBIT model: phase IA: define and IB: refine. During phase IA, the study team developed solutions for the stated clinical problem-adjustment to life post cystectomy-by reviewing the literature and collecting feedback from clinicians, professional organizations, bladder cancer survivors, and their caregivers. During Phase IB, the study team focused on tailoring content in the CRIS software to the user as well as usability testing with 7 participants. The finished product is CRIS, a web-based software for survivors of bladder cancer and their caregivers to serve as a health management and lifestyle resource after surgery. Overarching themes from phase IA (participant feedback) included how to use new medical equipment, tips and tricks for easier living with new medical equipment, questions about health maintenance, and questions about lifestyle modifications. To accommodate our target population, we also incorporated recommendations from the Americans with Disabilities Act for website design, such as large text size, large paragraph spacing, highly contrasting text and background colors, use of headings and labels to describe the purpose of the content, portrait orientation without the need for horizontal scrolling, multiple ways to access a web page within a set of pages, ability to navigate web pages in sequential or