Date of Award

May 2016

Degree Type

Dissertation

Degree Name

Doctor of Philosophy

Department

Biomedical and Health Informatics

First Advisor

Priya Nambisan

Committee Members

Ron Cisler, Alexandra Dimitroff, Jake Luo

Keywords

Consumer Health Informatics, Medical Informatics, Usability Testing

Abstract

Introduction: Having recently been discharged from the hospital, several breast cancer survivors find themselves unable to adjust to the transition and take charge of their own health, away from the confines of the hospital.

With the rapid advancement in treatment methods and techniques, the rate of breast cancer survivors has grown exponentially. It is crucial to provide adequate means to support cancer survivors in an active manner. This includes regular monitoring for recurrence (or occurrence of new cancers), handling any related and non-related comorbidities, provide recommendations for preventive care as well as dealing with any long term side effects from the treatment.

The specific objective of this research is to design and develop a personalized web application to support breast cancer survivors after treatment (chemotherapy and/or radiation), as they deal with post-treatment challenges, such as comorbidities and side-effects of treatment.

Methodology: I used an iterative design and development approach to produce a web application for breast cancer survivors that help them monitor their quality of life, provide them with personalized alerts based on their breast cancer related medical history as well as timely alerts, to remind them of follow up visits. Finally, I utilized a combination of qualitative methodology (thematic analysis), as well as user task analysis to assess the acceptability and usability of the prototype among a group of breast cancer survivors. User feedback was gathered on their perceived value of the application, and any user-interface issues that may hinder the overall usability among lay users were identified.

Results: Fifteen breast cancer survivors participated in the acceptability and usability testing of the prototype. The prototype was found to be perceived as unique and valuable among the participants, in its ability to utilize personalized breast cancer related medical history. The application’s portability and capability of organizing their entire breast cancer related medical history as well as the at-home tracking of various quality of life indicators were perceived to be valuable features. The application had an overall high usability, however certain sections of the application, such as viewing observations history were not as intuitive to locate. While participants appreciated the visual and graphical elements of the website, the overall experience of the application would benefit from incorporating some sociable elements that exhibit positive re-enforcement within the end user and provide a friendlier and fun experience.

Conclusion: The results of the study showcase the need to provide more personalized tools and resources to breast cancer survivors to support them in self-management after completion of treatment. It also demonstrates the ability to integrate breast cancer survivorship plans from diverse providers and paves the way to add further value-added features in consumer health applications, such as personal decision support. The feedback received from end-users will be used in order to further improve the prototype and address any existing user-interface issues. It is hoped that making such tools more accessible could help in engaging survivors to play an active role in managing their health and also encourage shared-decision making with their providers.

Available for download on Thursday, May 31, 2018

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