Many people in Canada are affected by hepatitis C. An estimated 332,414 people were antibody positive for hepatitis C in Canada in 2011. This means they had evidence of a current or past infection with hepatitis C. An estimated 220,697 to 245,987 Canadians had chronic hepatitis C infection in 2011.
In 2014–15, CATIE undertook a national needs assessment of clients engaged in hepatitis C care. The needs assessment was designed to provide information on the priority knowledge needs of people living with hepatitis C and how these needs can be met. The research showed a high level of need for hepatitis C information, especially among younger people and Aboriginal peoples.
CATIE developed an online survey to assess the information needs of people engaged in hepatitis C care. Eight medical clinics serving people living with hepatitis C located in British Columbia, Alberta, Saskatchewan, Manitoba and Ontario were engaged to recruit participants to complete the survey.
The online survey was available in both English and French and took about 10 minutes to complete. It asked basic demographic questions, and questions designed to better understand participant information needs and the best ways to fulfill those needs. All responses were confidential and anonymous.
In total, 326 people living with hepatitis C participated in the survey. The profile of the participants was as follows:
- 66% were men
- 63% were aged 46 and older
- 27% self-identified as Aboriginal
- 38% were diagnosed in the past 10 years
- 33% were diagnosed 10 to 19 years ago
- 17% were diagnosed 20 or more years ago
Overall, survey participants were very engaged in hepatitis C care. Eighty-seven percent had discussed treatment options with their doctor. In terms of treatment, 22% had been on treatment and cleared the virus, 16% had been on treatment and had not cleared the virus, and 16% were currently on treatment. Almost half had never been on treatment (46%).
Participants are involved in their care but want to be more involved
Over 80% of participants indicated they were involved in decision making around their hepatitis C care. Despite this high level of engagement, 41% wanted more involvement in making decisions about their care. People who felt they had little or no knowledge of hepatitis C were significantly more likely to want greater involvement than those who felt more knowledgeable. Younger participants (45 and younger) and Aboriginal people were also more likely to report wanting more involvement in decision making compared to others.
Very low levels of hepatitis C knowledge
A substantial proportion of respondents reported very low levels of hepatitis C knowledge generally and hepatitis C treatment knowledge specifically. Seventy-seven percent of participants reported they don’t know ‘a lot’ about hepatitis C generally and 80% reported they don’t know ‘a lot’ about hepatitis C treatment.
Younger participants and Aboriginal participants were more likely to report low hepatitis C knowledge levels.
Very high need for hepatitis C information
Overall, 85% of participants reported needing hepatitis C information. The need for information was greater for Aboriginal people compared to non-Aboriginal people.
The highest priority topics for general information were:
- how hepatitis C affects the body
- staying healthy
- how to prevent transmitting hepatitis C to others
- treatments for hepatitis C
The highest priority topics for treatment information were:
- how to get ready to start treatment
- how to deal with side effects
- how to get treatment and have the cost covered
How do clients want to get hepatitis C information?
In general, participants prioritized the internet, pamphlets, and workshops when asked how they would like hepatitis C information delivered. Younger participants were significantly more likely to rank the internet and apps as important for receiving information compared to older participants. Aboriginal participants were significantly more likely to rank workshops and pamphlets as important compared to non-Aboriginal participants.
Overall, clients engaged in hepatitis C care report a high level of need for hepatitis C information. This need is greatest among younger people and Aboriginal people. Higher levels of knowledge about hepatitis C are linked to greater involvement in decision making about hepatitis C care.
The results of this research can help frontline workers support people living with hepatitis C to engage more directly in decisions about their care.
CATIE’s client resources
yourlanguage.hepcinfo.ca – information about hepatitis C in eleven languages
- Trubnikov M, Yan P, Archibald C. Estimated prevalence of Hepatitis C Virus infection in Canada, 2011. Canadian Communicable Disease Report. 2014 Dec 18;40(19). Available from: http://www.phac-aspc.gc.ca/publicat/ccdr-rmtc/14vol40/dr-rm40-19/surveillance-b-eng.php
- CATIE. Room for improvement: Knowledge exchange needs of people living with hepatitis C. Toronto, ON: CATIE; 2015. Available from: http://www.catie.ca/sites/default/files/Hepatitis%20C%20needs%20assessment%20report_final.pdf