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1.
PEC Innov ; 2: 100165, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37384160

ABSTRACT

Objective: In 2016, the encapsulated follicular variant of papillary thyroid carcinoma (EFVPTC) was reclassified as noninvasive follicular thyroid neoplasm with papillary-like nuclear features (NIFTP). This reclassification removed the word "carcinoma" and the definition of cancer from the diagnosis. While the nomenclature change was expected to psychologically impact patients, that question has not been systematically explored. Using qualitative methods, we aimed to explore the psychological impact of reclassification on thyroid cancer patients and their preferences for receiving reclassification information. Methods: Semi-structured interviews with nine non-EFVPTC thyroid cancer survivors were conducted. Participants were presented with a hypothetical reclassification scenario, and interview transcripts were analyzed using a thematic content analytic approach. Results: Participants expressed a range of psychological reactions to reclassification information, primarily negative, including anger, mistrust, and uncertainty, but also relief. All participants expressed difficulty understanding the concept of reclassification. Communication preferences favored conversation with an established medical provider over written materials, such as a letter. Discussion and conclusion: Communication must align with patient preferences. Being mindful of potential negative psychological reactions when providing information on cancer reclassification is vital. Innovation: This study examines reactions to cancer reclassification information and preferences for how this information should be communicated.

2.
Procedia Comput Sci ; 206: 195-205, 2022.
Article in English | MEDLINE | ID: mdl-36567868

ABSTRACT

Cancer patients often want information from "peers" with the same diagnosis or treatment. To increase access to this valuable resource, we developed a website to deliver written peer support to cancer patients undergoing stem cell transplant. Because little evidence describes how to optimize benefits or reduce potential harms of written peer support, we gathered multiple forms of stakeholder feedback to inform the website's ethical approach, personalization, design, function, and content: a Community Advisory Board; a longitudinal study of patients' written peer support needs and motivations; focus groups; semi-structured interviews; and usability testing. Findings provide a rich foundation for website development.

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