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Many people with hepatitis C do not receive care: Why?
May 2, 2013 by Terri Buller-Taylor, Project Manager, Hepatitis Program, Clinical Prevention Services, BCCDC
An estimated 60,000 British Columbians are affected by hepatitis C. The disease has a heterogeneous presentation and a slow, unpredictable course that leads to serious liver disease and liver cancer.
Clinicians are unable to predict which patients will develop disease complications, making long term patient counseling on self-care and health promotion, disease monitoring, management and follow-up important. However, many affected by hepatitis C do not go for care, with non-attendance rates ranging from 28% to 80%.
The Attendance for Hepatitis C Care project, led by Dr. Gail Butt at the BCCDC, explored why people with hepatitis C either seek, delay, interrupt or do not seek hepatitis care based on interviews with people affected and providers. The project involved a national network of those affected (n=77) and providers (n=155) who explored the reasons for non-attendance for hepatitis C care.
The research identified six main factors associated with non-attendance for hepatitis C care. The first four involve personal and interpersonal factors while the last two identify structural or system issues.
Personal and interpersonal factors
- Determining the benefits
- Competing priorities
- Knowledge gaps
- Access to services
- Restrictive policies
For some, non-attendance was a way to avoid possible negative impacts associated with disclosing their hepatitis C status or to protect themselves from negative care experiences, particularly in emergency room settings and rural communities.
Determining the benefits
Participants described many issues that influenced their decisions to attend such as being told by a provider that follow up care was not needed, feeling healthy or that care was pointless, past care experiences that were not perceived as beneficial, or personal costs were felt to be too high.
Many described priorities that needed to be managed in addition to hepatitis C including other health conditions, life instability and/or work and life responsibilities.
Both patient and provider participants reported knowledge gaps and misinformation about hepatitis C and its management and treatment. Difficulties understanding hepatitis C information and sorting through sometimes conflicting information from multiple sources was also reported.
Access to services
Participants reported care being unavailable in some instances, particularly in rural and remote areas, or difficult to access to due to financial costs, wait times, or because of a lack of integrated or culturally appropriate care.
Clinic policies around making and keeping appointments were barriers to accessing care for some. Abstinence requirements of some providers, the necessity of a referral to see a specialist and provincial eligibility criteria for anti-viral therapy were other issues that contribute to non-attendance.
A report on the factors affecting attendance for hepatitis C care and a narrated slide presentation describing each of these factors is available from the BCCDC, along with other resources to improve service delivery and to encourage engagement in care for those affected by hepatitis C.
For further information
This project was supported by the BC Centre for Disease Control and the University of British Columbia, and funded by the Public Health Agency of Canada. BCCDC's Hepatitis division coordinates viral hepatitis prevention and treatment in BC through the integration of public health and care systems, comprehensive health promotion, and prevention and care of at-risk individuals and vulnerable populations.
Categories: New knowledge