Background: Patients with head and neck cancer (HNC) carry a clinically significant symptom burden, alterations in function (e.g. 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 high rates of depression. Patients may suffer undue anxiety because they find treatment incomprehensible, which is partially a function of limited, understandable information. This can be particularly challenging for patients with limited health literacy. Furthermore, a globalized world consisting of cultural differences increases the need to enhance transparent communication of risk. Research on risk literacy and medical decision-making validates that across different cultures, people often have severe obstacles in grasping a host of prerequisite concepts for understanding health-related risk information such as numbers, graphs, and basic medical facts. 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. A scoping review was conducted on electronic, decision aids (DAs) for oncology patients that returned 4217 articles, but only 167 for HNC, with 12 meeting the inclusion criteria. Three themes were identified: (1) both patients and physicians valued the DA; (2) DAs should be visually supported by images; and (3) use of a DA lessened decisional conflict and anxiety while improving knowledge, satisfaction and shared decision-making. This informed the design of a prototype DA. Semi-structured interviews were conducted with 12 survivors of HNC who completed treatment at BC Cancer- Victoria on their experiences, feedback on the utility of a DA, and insights into design features. Thematic analysis resulted in 12 themes that were organized into 3 categories. The first category, “the patient experience,” included three themes: “patients have high, through varying information needs”; “an emotional experience”; and “stories of coping, strength and resiliency.” The second category, “electronic DAs and decision support,” also included three themes: “familiarity with decision aids”; “support of concept: usefulness and of visual aids”; and “versatility of the prototype.” The last category, “evaluation of prototype”, contained six themes: “reaction to prototype”; “favourited features”; “complexity”; “preference for customizability”; “suggestions for improvement”; and “presentation device.”
Key Message: The use of DAs have been shown to better inform and increase patients’ knowledge, accuracy of risk perception, and congruency between informed values and care choices allowing them to take part in active decision-making, compared to usual care. Survivors of HNC were in unanimous support of using visual images to help explain treatment and assist in decision making on treatment options. Furthermore, they contributed invaluable feedback on the prototype design, demonstrating the value of a co-design methodologies. / Graduate
| Identifer | oai:union.ndltd.org:uvic.ca/oai:dspace.library.uvic.ca:1828/13909 |
| Date | 29 April 2022 |
| Creators | Stringer, Eleah |
| Contributors | Kushniruk, Andre W., Lum, Julian J. |
| Source Sets | University of Victoria |
| Language | English, English |
| Detected Language | English |
| Type | Thesis |
| Format | application/pdf |
| Rights | Available to the World Wide Web |
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