The Patient - Patient-Centered Outcomes Research

, Volume 12, Issue 6, pp 631–638 | Cite as

What Matters Most for Treatment Decisions in Hepatitis C: Effectiveness, Costs, and Altruism

  • T. Joseph MattinglyIIEmail author
  • Julia F. Slejko
  • Eleanor M. Perfetto
  • Shyamasundaran Kottilil
  • C. Daniel Mullins
Original Research Article



Comparative evaluations of innovations in hepatitis C virus (HCV) drug therapy typically focus on sustained virologic response (SVR) without addressing psychological and socioeconomic challenges that extend beyond virologic cure. This study aims to identify and prioritize variables important to patients when making the decision to start HCV treatment.


A three-round Delphi process was conducted with the first round derived from a systematic literature review and advisory board input, including patients who have been affected by HCV, physicians, pharmacists, and a patient group representative. Delphi panelists were HCV patients who had received treatment or were considering treatment. Panelists were asked about factors influencing their HCV treatment decisions. Thematic analysis of open-ended responses based on grounded theory was used. Agreement with each category and rankings based on order of importance from the patient perspective was reported.


Treatment effectiveness (100% agreement), longer life (88%), fear of complications (84%), financial issues (80%), quality of life (100%), and impact on society (80%) were considered important factors to patients in decisions to seek treatment. A fear of harming others (87%) was considered more important than physical symptoms (83%) in terms of patient-reported problems caused by HCV. Medication costs (91%) were identified as the most important costs of having HCV, followed by doctor costs (77%).


In addition to treatment effectiveness, patient experiences with financial problems, quality of life, and altruistic desires impact HCV patients’ decisions. The risk of infecting others may motivate patients to seek treatment as much as personally experienced physical symptoms.



The authors would like to thank the patient-centered advisory board members for their contribution to the concept, design, and interpretation of this study.

Author contributions

Study concept and design: all; drafting of manuscript: TJM; critical reviews: all; statistical analysis: TJM; interpretation of data: all; final version approval: all.


The Stakeholder Advisory Board described in this manuscript was initiated with a research grant from the Patient Centered Outcomes Research Institute.

Compliance with ethical standards

Conflict of interest

TJM reports consultant fees from G&W Labs, BMS, and NHC, all unrelated to this research; EMP is an employee of the National Health Council, which receives membership dues and sponsorship funding from a wide range of organizations. For the full list, please see; JFS reports grants from the PhRMA Foundation and PhRMA unrelated to this work; SK reports grants from Gilead Sciences, Merck, and Arbutus Pharma; CDM reports grants from Merck and consulting fees from Bayer, Boehringer-Ingelheim, Illumina, Janssen, Merck, Pfizer, Regeneron, and Sanofi.

Supplementary material

40271_2019_378_MOESM1_ESM.pdf (112 kb)
Supplementary material 1 (PDF 111 kb)
40271_2019_378_MOESM2_ESM.pdf (114 kb)
Supplementary material 2 (PDF 114 kb)
40271_2019_378_MOESM3_ESM.pdf (109 kb)
Supplementary material 3 (PDF 109 kb)


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Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  1. 1.Department of Pharmacy Practice and ScienceUniversity of Maryland School of PharmacyBaltimoreUSA
  2. 2.Department of Pharmaceutical Health Services ResearchUniversity of Maryland School of PharmacyBaltimoreUSA
  3. 3.National Health CouncilWashingtonUSA
  4. 4.Institute of Human VirologyUniversity of Maryland School of MedicineBaltimoreUSA

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