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

Overview

Journal Patient

Specialty Health Services

Date 2016 Nov 25

PMID 27882509

Citations 9

Authors

Donna M Evon

Carol E Golin

Teodora Stoica

Rachel E Jones

Sarah J Willis

Joseph Galanko

Michael W Fried

Affiliations

Soon will be listed here.

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.

Citing Articles

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Assessing potential cures: are there distinctive elements of value beyond health gain?.

Hendriks S, Pearson S J Comp Eff Res. 2021; .

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Experiences of an HCV Patient engagement group: a seven-year journey.

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A Systematic Review of Patient-Reported Outcomes in Primary Biliary Cholangitis and Primary Sclerosing Cholangitis.

Kim H, Lieber S, Rogers M, Moon A, Loiselle M, Walker J Hepatol Commun. 2020; 4(10):1502-1515.

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Patient Questions and Physician Responses in a Chinese Health Q&A Website: Content Analysis.

Hong Z, Deng Z, Evans R, Wu H J Med Internet Res. 2020; 22(4):e13071.

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