JMIR Publications

ABSTRACT

Background:

Patients diagnosed with differentiated thyroid cancer (DTC) who receive radioactive iodine (RAI) treatment experience acute, medium, and late treatment effects. While the timing of these effects varies by individual, common post-treatment effects include dry mouth, salivary gland swelling, dry eyes, dental caries, and nose bleeds. The nature of symptoms due to RAI treatment can impact patient health-related quality of life (HRQOL). Adequate information during the post-primary treatment phase remains an unmet need among this population.

Objective:

This qualitative study aimed to identify and understand potential self-management strategies for RAI-specific symptom burden from the perspectives of patients and stakeholders (cancer care providers and patient advocates).‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬ An additional aim included assessing the features and functionalities desirable in the formative work for a web-based intervention to effectively engage patients in their self-management and survivorship care.

Methods:

We conducted six focus groups with 22 patients diagnosed with DTC who completed RAI treatment and 12 individual stakeholder interviews with providers involved in DTC care. We elicited participants’ perspectives on a symptom management web-based intervention. Prior to the interviews, participants completed a demographics survey. A moderator used semi-structured interview guides during patient focus groups and stakeholder interviews to obtain feedback on the content and layout of the intervention. Interviews were audio recorded, deidentified, and transcribed. Content analysis was performed on focus group and stakeholder interviews.

Results:

Participants identified the most prevalent RAI symptoms that were difficult to manage as: dry mouth, salivary gland swelling, and changes in taste. Across focus groups and stakeholder interviews, nutrition-based symptom management strategies, communication with family members, and practical survivorship follow-up information emerged as additional helpful content to include in the web-based supportive care intervention. Feedback elicited from both groups found education and symptom management videos to be helpful in patient self-management of RAI symptoms, whereas patients and stakeholders provided mixed feedback on the benefits of the frequently asked questions page.

Conclusions:

Results from focus group participants and stakeholders in the intervention planning process of this study suggest key intervention components to empower patients with DTC to self-manage RAI symptoms on a web-based platform.