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US research identifies information priorities for people who are candidates for HCV therapy

Michael Carter
14 December 2016

People with hepatitis C virus (HCV) who are candidates for therapy with new all-oral regimens want information on the potential harms and benefits, details of treatment regimens and also basic information on HCV-related liver disease, US investigators report in the journal Patient. Information priorities included viral cure, long-term prognosis, side-effects and lifestyle changes needed during therapy.

“The findings from this study demonstrate that patients with HCV wish to consider a plethora of information to assist them to make informed decisions about their HCV treatment options,” comment the investigators. “The data derived from this study provide an in-depth understanding of the most important informational needs of patients contemplating HCV treatment…the findings have implications for clinical practice, including patient-provider communication and patient information.”

Several highly effective, all oral HCV treatment combinations are now available. There are limited data regarding the topics which people consider most important when making decisions on the use of HCV treatment.

Investigators from the University of North Carolina, Chapel Hill, therefore designed a study with three aims:

  • the information categories that people need to make informed decisions about treatment
  • the importance of each information category
  • which information categories had the highest priority to reach a decision about therapy.

The study involved two groups of people. The first listed all information topics they thought would be important to reach a decision about therapy. The investigators grouped their response into broad topics and subcategories. This group was recruited between November 2013 and January 2014, coinciding with approval of two new all-oral regimens, simprenavir/sofosbuvir and sofosbuvir/ribavirin. The second group ranked the importance of the individual subcategories identified by the first group. Recruitment of this group took place between February and March 2015, shortly after the approval of sofosbuvir/ledipsavir. None of the people in either group were currently taking therapy.

A total of 45 people were recruited to the first group. Their mean age was 45 years, 58% were male and 60% had previous experience of HCV therapy. There were 57 people in group two. Their mean age was 67 years, two-thirds were male and 79% had been previously been treated for HCV.

The information needs identified by the first group fell into five broad categories:

  • Harms of treatment, identified by all 45 participants. Information needs in this category fell into five subcategories: side-effects, impact on quality of life, cost of therapy, worsening of HCV, and impact on wider health and other illnesses.
  • Details of treatment regimen. This was identified by 86% of individuals. There were three subcategories: treatment protocol, such as length of therapy; information on specific medicines, including how are they taken and potential interactions; lifestyle changes after changing treatment, for instance changes in diet and use of alcohol.
  • Benefits of treatment. This was identified by approximately two-thirds of individuals. Subcategories included viral cure, impact on long-term survival, potential improvements in other health conditions and HCV symptoms and functioning.
  • Basic information about HCV and liver disease. Approximately half of individuals stated they required this information in order to reach an informed decision about therapy.

Individuals in group two considered the importance of 17 individual subcategories. They rated 16 of these categories as “extremely important” or “pretty important” to reach a decision about treatment. Information on viral cure was rated as the most important information need; information on support groups had the lowest rating.

Priority areas where more research was needed in order to provide information to people were viral cure, followed by long-term survival, and side-effects of treatment. The most important subcategories for which there was already a sufficient research basis were liver disease, lifestyle change needed for treatment and information about treatment protocols and individual medications.

“Knowing what treatment issues matter most to patients is important for both patient education as well as designing patient-centered studies,” conclude the authors. “Patient provider communication should focus on what is currently known in the literature and help to distill the advantages and disadvantages of each treatment option relative to what is important to the individual patient. The findings from this study also provide the foundation on which to develop future…studies to evaluate treatment issues that have not been studied but which are salient to patients contemplating their treatment options.”


Evon DM et al. What’s important to the patient? Informational needs of patients making decisions about hepatitis C treatment. Patient, online edition. DOI: 10.1007/s40271-016-0207-7 (2016).