Authors: Erin G. Roth, Justin Kim, Julia F. Slejko, C. Daniel Mullins, Jennifer L. Doyle, David L. Levitt, Miguel Melendez, Kyle J. Fletke & Yinin Hu
Abstract
Overview
This paper describes stakeholder involvement and formative qualitative research in the creation of health state descriptions (HSDs) or vignettes for low-risk thyroid cancer. The aim of this project was to engage stakeholders in the contribution of a novel set of HSDs, an important first step in the process of assessing value in thyroid cancer health states.
Methods
We draw upon formative, descriptive qualitative methods, following a multi-stage framework of data collection. We conducted individual semi-structured interviews, cognitive interviews, and focus groups with thyroid cancer patients, community providers, academic subspecialists, and participants with no thyroid cancer diagnosis (N = 31). The HSDs went through several iterations over the course of a year, in collaboration with a highly engaged community advisory board, laying the groundwork for HSDs that are comprehensible, comparable, and appropriate for stated-preference research.
Findings
Thyroid cancer survivors compared their experiences with those described in the HSDs. Feedback included concern for the emotional well-being of study participants who would be reading them. Providers were attuned to the need for clinical accuracy and made suggestions to reflect their clinical experience, including for patients with complications or disease progression. The pilot participants with no thyroid cancer were particularly valuable in promoting the need to simplify language and maximize readability.
Discussion
Stakeholder engagement was critical to being responsive to feedback as the iterations were refined and presented. Continuous engagement and consultation with multiple sources strengthened the HSDs. A secondary outcome from this project is that stakeholders expressed interest in adapting the HSDs into decision aids for people newly diagnosed with low-risk thyroid cancer.
Key Points for Decision Makers |
Stakeholder engagement is critical to the creation of health state descriptions (vignettes) that reflect lived experiences and accurate content. |
| This study documents the process of understanding the treatment-related perspectives of patients and healthcare providers in the context of low-risk thyroid cancer. |
| Our findings add to the increased patient and provider awareness and openness to non-surgical treatments for low-risk thyroid cancer. |