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Accepted for/Published in: JMIR Formative Research

Date Submitted: Sep 27, 2022
Date Accepted: Apr 3, 2023

The final, peer-reviewed published version of this preprint can be found here:

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

Diefenbach MA, Marziliano A, Siembida E, Mistretta T, Pfister H, Yacoub A, Aibel K, Patel P, Lapitan E, Tagai EK, Miller SM

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

JMIR Form Res 2023;7:e41876

DOI: 10.2196/41876

PMID: 37347533

PMCID: 10337367

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

  • Michael A. Diefenbach; 
  • Allison Marziliano; 
  • Elizabeth Siembida; 
  • Thomas Mistretta; 
  • Halie Pfister; 
  • Andrea Yacoub; 
  • Kelli Aibel; 
  • Priya Patel; 
  • Emmanuel Lapitan; 
  • Erin K. Tagai; 
  • Suzanne M. Miller

ABSTRACT

Background:

Bladder cancer survivors and their caregivers face profound practical and psychosocial challenges after surgical treatment with cystectomy.

Objective:

To improve the health-related quality of life and post-surgical outcomes of both bladder cancer survivors and their caregivers, the team developed the Cancer Resource, Information and Support (CRIS) software. The purpose of this manuscript is to report on the development and usability testing of the CRIS software.

Methods:

The development of the CRIS software was guided by the Obesity-Related Behavioral Intervention Trials (ORBIT) model for developing behavioral treatments for chronic diseases. This paper focuses on two 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 and 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.

Results:

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. Usability participants evaluated CRIS very positively, indicating that CRIS was easy to use, the functions are well-integrated, and, if available, they would use CRIS frequently.

Conclusions:

CRIS is unique because it is the first web-based software developed for bladder cancer survivors and their caregivers to help adjust to life following cystectomy. The systematic development of CRIS demonstrates the importance of incorporating stakeholder input throughout the design process. Clinical Trial: N/A


 Citation

Please cite as:

Diefenbach MA, Marziliano A, Siembida E, Mistretta T, Pfister H, Yacoub A, Aibel K, Patel P, Lapitan E, Tagai EK, Miller SM

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

JMIR Form Res 2023;7:e41876

DOI: 10.2196/41876

PMID: 37347533

PMCID: 10337367

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