Decision Aids for Patients With Head and Neck Cancer: Qualitative Elicitation of Design Recommendations From Patient End Users

Abstract

Background Patients with head and neck cancer (HNC) carry a clinically significant symptom burden, have alterations in function (eg, 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 to and during treatment are predictive of positive outcomes. Providing patient-centered decision support and 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 This study aims to gather requirements from survivors of HNC on the utility of key visual components to be used in the design of an electronic decision aid (eDA) to assist with decision-making on treatment options. Methods Informed by a scoping review on eDAs for patients with HNC, screens and visualizations for an eDA were created and then presented to 12 survivors of HNC for feedback on their utility, features, and further requirements. The semistructured interviews were video-recorded and thematically analyzed to inform co-design recommendations. Results A total of 9 themes were organized into 2 categories. The first category, eDAs and decision support, included 3 themes: familiarity with DAs, support of concept, and versatility of the prototype. The second category, evaluation of mock-up, contained 6 themes: reaction to the screens and visualizations, favorite 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 or augment the quality of education received. Participants liked the simple design of the mock-ups they were shown but, ultimately, desired customizability to adapt the eDA to their individual information needs. This research highlights the value of user-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.