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What’s Important to the Patient? Informational Needs of Patients Making Decisions About Hepatitis C Treatment

The Patient - Patient-Centered Outcomes Research volume 10, pages 335–344 (2017)Cite this article

Abstract

Background and Objectives

Multiple treatment options with direct-acting antivirals are now available for hepatitis C virus (HCV). Study aims were to understand (1) the informational topics patients want to have to make informed treatment decisions; (2) the importance patients place on each topic; and (3) the topics patients prioritize as most important.

Methods

We used a mixed-methods study of two samples recruited from an academic liver center. Participants were not currently on treatment. Sample I (n = 45) free listed all informational topics deemed important to decision making. Raw responses were coded into several broad and subcategories. Sample II (n = 38) rated the importance of the subcategories from Sample I and ranked their highest priorities on two surveys, one containing topics for which sufficient research existed to inform patients (‘static’), and the other containing topics that would require additional research.

Results

The topics listed by Sample I fell into six broad categories with 17 total subcategories. The most oft-cited informational topics were harms of treatment (100%), treatment benefits (62%), and treatment regimen details (84%). Sample II rated 16 of 17 subcategories as “pretty important’ or “extremely important”. Sample II prioritized (1) viral cure, (2) long-term survival, and (3) side effects on the survey of topics requiring additional research, and (1) liver disease, (2) lifestyle changes, and (3) medication details on the second survey of the most important static topics patients needed.

Conclusions

Patients weighed several informational topics to make an informed decision about HCV treatment. These findings lay the groundwork for future patient-centered outcomes research in HCV and patient-provider communication to enhance patients’ informed decision making regarding direct-acting antiviral treatment options.

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Author contributions

Donna M. Evon, Carol E. Golin, and Michael W. Fried developed the study concept and design. Teodora Stoica, Rachel Jones, and Sarah Willis were involved in data collection and entry. Donna M. Evon, Carol E. Golin, Joseph Galanko, Rachel Jones, and Teodora Stoica were involved in the data analysis. Joseph Galanko conducted statistical analyses. All of the authors were involved with drafting or revising the manuscript for important intellectual content. All authors have given approval of the final manuscript. Donna M. Evon is the guarantor of this work.

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Affiliations

  1. Division of Gastroenterology and Hepatology, University of North Carolina, CB# 7584, 8010 Burnett-Womack, Chapel Hill, NC, 27599, USA

    Donna M. Evon, Teodora Stoica, Rachel E. Jones, Joseph Galanko & Michael W. Fried

  2. Department of Medicine, Department of Health Behavior, University of North Carolina, Chapel Hill, NC, USA

    Carol E. Golin

  3. Department of Epidemiology, University of North Carolina, Chapel Hill, NC, USA

    Sarah J. Willis

Authors
  1. Donna M. Evon
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  2. Carol E. Golin
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  3. Teodora Stoica
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  4. Rachel E. Jones
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  5. Sarah J. Willis
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  6. Joseph Galanko
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  7. Michael W. Fried
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Corresponding author

Correspondence to Donna M. Evon.

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Funding

Funding to support this study was provided to Donna M. Evon (K23DK089004-04), Carol E. Golin (K24HD06920), Joseph Galanko (DK034987), and Michael W. Fried (K24DK066144). Additional support was provided by the University of North Carolina at the Chapel Hill Center for AIDS Research (P30 AI-50410).

Conflict of interest

Carol E. Golin, Teodora Stoica, Rachel Jones, Sarah Willis, and Joseph Galanko declare that they have no conflict of interests to disclose. Donna M. Evon has served as an ad hoc consultant and received an honorarium from Gilead. Michael W. Fried has received research funding from and served as a consultant for AbbVie, BMS, Gilead, and Merck.

Ethics approval

All procedures performed in this study involving human participants were in accordance with ethical standards of the institutional research committee and with the 1964 Helsinki Declaration and its later amendments or comparable standards.

Consent for publication

Informed consent was obtained from all individual participants included in the study.

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Evon, D.M., Golin, C.E., Stoica, T. et al. What’s Important to the Patient? Informational Needs of Patients Making Decisions About Hepatitis C Treatment. Patient 10, 335–344 (2017). https://doi.org/10.1007/s40271-016-0207-7

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  • DOI: https://doi.org/10.1007/s40271-016-0207-7

Keywords

  • Sofosbuvir
  • Thematic Saturation
  • Informational Topic
  • Veteran Affair System
  • Viral Cure