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Exploring Interactive Survivorship Plans: Patient
Perceived Value, Acceptance and Usability
Evaluation of an Online Breast Cancer
Survivorship Tool
Akshat Kapoor
University of Wisconsin-Milwaukee
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EXPLORING INTERACTIVE SURVIVORSHIP PLANS: PATIENT PERCEIVED
VALUE, ACCEPTANCE AND USABILITY EVALUATION OF AN ONLINE
BREAST CANCER SURVIVORSHIP TOOL
by
Akshat Kapoor
A Dissertation Submitted in
Partial Fulfillment of the
Requirements for the Degree of
Doctor of Philosophy
in Biomedical and Health Informatics
at
The University of Wisconsin-Milwaukee
May 2016
ii
ABSTRACT
EXPLORING INTERACTIVE SURVIVORSHIP PLANS: PATIENT PERCEIVED
VALUE, ACCEPTANCE AND USABILITY EVALUATION OF AN ONLINE
BREAST CANCER SURVIVORSHIP TOOL
by
Akshat Kapoor
The University of Wisconsin-Milwaukee, 2016
Under the Supervision of Professor Priya Nambisan
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
iii
(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
iv
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.