The Hepatitis C Self-management Programme

A Randomized Controlled Trial

E. J. Groessl; K. R. Weingart; C. J. Stepnowsky; A. L. Gifford; S. M. Asch; S. B. Ho


J Viral Hepat. 2011;18(5):358-368. 

In This Article

Abstract and Introduction


Chronic hepatitis C (HCV) infection afflicts millions of people worldwide. While antiviral treatments are effective for some patients, many either cannot or choose not to receive antiviral treatment. Education about behavioural changes like alcohol avoidance and symptom management, in contrast, is universally recommended, particularly in HCV-infected persons from disadvantaged groups where liver risk factors are most prevalent. Self-management interventions are one option for fostering improved HCV knowledge and health-related quality of life (HRQOL). One hundred and thirty-two patients with VA with HCV (mean age of 54.6, 95% men, 41% ethnic minority, 83% unmarried, 72% unemployed/disabled, 48% homeless in last 5 years) were randomized to either a 6-week self-management workshop or an information-only intervention. The weekly 2-h self-management sessions were based on cognitive-behavioural principles and were adapted from an existing self-management programme that has been efficacious with other chronic diseases. HCV-specific modules were added. Outcomes including HRQOL, HCV knowledge, self-efficacy, depression, energy and health distress were measured at baseline and 6 weeks later. Data were analysed using ANOVA. When compared to the information-only group, participants attending the self-management workshop improved more on HCV knowledge (P < 0.001), HCV self-efficacy (P = 0.011), and SF-36 energy/vitality (P = 0.040). Similar trends were found for SF-36 physical functioning (P = 0.055) and health distress (P = 0.055). Attending the self-management programme improved disease knowledge and HRQOL 6 weeks later in this disadvantaged population. The intervention can improve the health of people with hepatitis C, independent of antiviral therapy. Future research will study longer-term outcomes, effects on antiviral treatment and costs.


Hepatitis C virus (HCV) infects about 1.8% of the US population[1] and often co-occurs with substance abuse problems, homelessness and impoverishment.[2–5] Long-term medical consequences of HCV include cirrhosis, hepatocellular carcinoma[6] and/or the need for liver transplant.[7] In addition, most HCV-infected individuals experience a variety of physical and psychological symptoms, functional limitations and impaired quality of life as a result of having HCV and co-existing chronic health problems.[8,9]

Treatment with antiviral medications eliminates the virus in many patients,[10,11] but lower success rates have been found outside of clinical trials.[12] Nevertheless, the vast majority of patients are either ineligible for treatment, refuse treatment, fail treatment, or treated with watchful waiting.[13] In fact, it is estimated that only about 20% of patients with VA with HCV have ever initiated antiviral treatment.[12] Common reasons for not receiving treatment are ongoing substance abuse, psychiatric disorders[12] and poor attendance of clinic appointments. Thus, despite ongoing improvements in antiviral treatments, there are few treatment alternatives for people with HCV.

Treatment recommendations for HCV-infected patients often include attending regular follow-up visits, obtaining additional laboratory tests, undergoing psychiatric evaluation,[14] abstention from alcohol,[15,16] avoiding transmission of the virus, avoiding certain foods or medications, exercise/losing weight[17–20] and making decisions concerning antiviral treatment.[21] Yet, many patients may not have the information or skills required to adhere to these recommendations successfully.[8]

As with other chronic illnesses, there are social, behavioural, and cognitive skills that patients can use to participate more effectively in the management of their HCV. These self-management strategies can help patients manage their symptoms, increase their functionality, make more informed decisions about treatment and potentially help prevent them from spreading the virus to others. Despite the need for such approaches, little or no research on self-management for hepatitis C has been undertaken.

Self-management interventions go beyond traditional patient education in that they are more comprehensive, focus more on facilitating change, teach problem-solving skills instead of primarily disseminating information[22] and engage the patient in the day-to-day management of his/her illness. Self-management programmes are primarily grounded in social cognitive learning theory.[23,24] Social learning theory emphasizes several dimensions along which change can occur, such as increasing self-efficacy and motivation, learning-specific illness management information and skills, enlisting support from a social network and monitoring symptoms and emotions.[25] Good self-management programmes typically address (i) disease management, medications, general health; (ii) role management and (iii) emotional management.[26] Patients learn to identify and prioritize their own problems, take appropriate action and enlist the support needed to solve these problems in collaboration with healthcare professionals and family.

The purpose of this study was to examine the effects of a hepatitis C self-management intervention on the quality of life of HCV-infected individuals who are not currently on or scheduled to start antiviral treatment.


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