JMIR Publications

ABSTRACT

Background:

Patients with head and neck cancer (HNC) carry a clinically significant symptom burden, alterations in function (ex. impaired ability to chew, swallow, and talk), and decrease in quality of life. Furthermore, treatment impacts social activities and interactions as patients report reduced sexuality and shoulder the highest rates of depression across cancer types. Patients suffer undue anxiety because they find the treatment incomprehensible, which is partially a function of limited, understandable information. Patients’ perceptions of having obtained adequate information prior and during treatment are predictive of positive outcomes. Providing patient-centered decision-support, utilizing visual images, may increase understanding of treatment options and associated risks to improve satisfaction with their decision and consultation, while reducing decisional conflict.

Objective:

To gather feedback from survivors of HNC on the utility and design of an electronic decision aid (eDA) prototype to assist with decision making on treatment options.

Methods:

Informed by a scoping review on eDAs for patients with HNC, a prototype eDA was created then presented to 12 survivors of HNC for feedback on its utility and features. The semi-structured interviews were video recorded and thematically analyzed to inform co-design recommendations.

Results:

Nine themes were organized into two categories. The first theme, eDAs and decision support, also included three themes: familiarity with decision aids; support of concept; and versatility of the prototype. The second theme, evaluation of mockup, contained six themes: reaction to protype; favourited features; complexity; preference for customizability; presentation device; and suggestions for improvement.

Conclusions:

All participants felt an eDA, used in the presence of their oncologist, would support a more thorough and transparent explanation of treatment and/or augment the quality of education received. Participants liked the simple design of the mockup prototype but, ultimately, desired customizability to adapt the eDA to their individual information needs. This research highlights the value of used-centered design, rooted in acceptability and utility, in medical health informatics, recognizing cancer survivors as the ultimate knowledge-holders. This research highlights the value of incorporating visuals into technology-based innovations to engage all patients in treatment decisions.