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Constructing Health State Descriptions for Low-Risk Thyroid Cancer: Stakeholder Engagement and Formative Qualitative Research

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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.

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Notes

  1. We used the more commonly understood term “vignette” when interacting with the advisory board and other study participants. However, we have used the research literature term “health state descriptions” for this paper.

  2. Quantitative data collection and results are being presented in a separate paper.

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Acknowledgements

We acknowledge and thank the following community advisory board members for their contribution: Mary Frauenhofer, Kia Zarbalian, and Vanda White.

Author information

Authors and Affiliations

  1. Department of Pharmaceutical Health Services Research, University of Maryland School of Pharmacy, Baltimore, USA

    Erin G. Roth, Julia F. Slejko & C. Daniel Mullins

  2. Department of Surgery, University of Maryland Baltimore, Baltimore, USA

    Justin Kim & Yinin Hu

  3. University of Maryland Thyroid Cancer Community Advisory Board, Baltimore, USA

    Jennifer L. Doyle, David L. Levitt & Miguel Melendez

  4. Maryland Endocrine, Columbia, MD, USA

    David L. Levitt

  5. Department of Family Medicine, University of Maryland School of Medicine, Baltimore, USA

    Kyle J. Fletke

Authors
  1. Erin G. Roth
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  2. Justin Kim
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  3. Julia F. Slejko
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  4. C. Daniel Mullins
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  5. Jennifer L. Doyle
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  6. David L. Levitt
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  7. Miguel Melendez
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  8. Kyle J. Fletke
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  9. Yinin Hu
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Corresponding author

Correspondence to Erin G. Roth.

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Funding

The study was funded by the American College of Surgeons Faculty Research Fellowship (awarded to YH) and the University of Maryland Greenebaum Comprehensive Cancer Center.

Conflict of interest

The authors have no competing interests that are directly relevant to the content of this article.

Availability of data and material

De-identified data are available from the corresponding author upon reasonable request.

Code availability

Not applicable.

Ethics approval

The study protocol was exempted by the University of Maryland Institutional Review Board (HP-00093873).

Consent to participate

Detailed research information forms were provided prior to participation, and participants were exempted from consent.

Consent for publication

Not applicable.

Author contributions

YH, DM, and JS contributed to the study design. ER, JK, and YH collected and analyzed the data, and YH supervised the study. JD, DL, and MM provided valuable feedback in their role as community advisors. KF contributed to recruitment. ER wrote the first draft of the manuscript; all authors commented on subsequent versions and read and approved the manuscript.

Additional information

Study funded by the American College of Surgeons Faculty Research Fellowship and the University of Maryland Greenebaum Comprehensive Cancer Center.

Supplementary Information

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Roth, E.G., Kim, J., Slejko, J.F. et al. Constructing Health State Descriptions for Low-Risk Thyroid Cancer: Stakeholder Engagement and Formative Qualitative Research. Patient 16, 67–76 (2023). https://doi.org/10.1007/s40271-022-00597-5

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  • DOI: https://doi.org/10.1007/s40271-022-00597-5

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