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

ORIGINAL RESEARCH ARTICLE

First Online: 23 November 2016
DOI: 10.1007/s40271-016-0207-7

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

Donna M. Evon1 • Carol E. Golin2 • Teodora Stoica1 • Rachel E. Jones1 • Sarah J. Willis3 • Joseph Galanko1 • Michael W. Fried1

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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.

Key Points for Decision Makers
Patients contemplating hepatitis C virus treatment want a great deal of information to make informed treatment decisions.

The most commonly cited informational topics included treatment harms such as side effects, treatment benefits such as viral cure, details of the treatment regimen, details about the virus, liver disease, and the risks of not receiving treatment.

The most important topics that require additional investigation were information about viral cure, long-term survival, and treatment side effects. The most important topics for which we have sufficient information that can be shared with patients include liver disease, lifestyle changes needed for treatment, and details about the medications and treatment protocol.

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