Patient-reported HCV treatment adherence

Posted on April 5, 2015

Patient-reported factors that negatively impact adherence to HCV therapies need to be understood and addressed

HCV treatment adherence is critical for patients to attain a sustained virological response (SVR), or cure. Unfortunately, up to 50% of patients have difficulty maintaining 80% adherence to HCV therapies, thereby compromising treatment outcomes. While new HCV therapies offer fewer side effects than interferon treatment, a variety of psychosocial factors that negatively affect adherence remain including lack of social support, language barriers, unstable housing, social marginalization, discrimination and employment.

Most studies of adherence in people with chronic hepatitis C have focused on special populations and marginalized groups, such as people who inject drugs. In the journal Psychology and Health, Victoria Sublette and colleagues report the findings from a series of in-depth, semi-structured interviews conducted between August and November 2012 to determine causes of low adherence in a non-specific group of 20 patients undergoing treatment for chronic hepatitis C at two hospital outpatient clinics in metropolitan Western Sydney, Australia (Sublette VA, et al. Psychology & Health. 2015;Feb 23:1-18. [Epub ahead of print]). Interestingly, although maybe not surprisingly, the authors noted that they were unable to contact and recruit patients who had discontinued treatment. People co-infected with HIV or Hepatitis B virus were excluded from this study.

The interviews were conducted with 20 patients ranging in age from 35-69 years, with a mean age of 52. Analysis of patient interviews identified four broad themes:

  • Motivations for commencing chronic hepatitis C treatment: witnessing friends or family members die from HCV-related cirrhosis or liver cancer instilled a fear of dying in many patients, who felt they had no choice but to have treatment. Stigma and shame were also motivators for both uptake and completion of treatment. Patients reported that completing treatment would eradicate the virus and the shame and embarrassment they had experienced from having the condition.
  • The influential role of provider communication throughout the treatment cycle: patients’ reasons for uptake and perceptions of their treatment experience were influenced by their physicians. Patients who received clinical feedback and personalized information regarding their illness reported the highest levels of satisfaction and motivation to adhere to and complete treatment. A few patients reported that the materials they received were overwhelming and raised concerns about their ability to comprehend the information. Some patients coped with their illness by denial or avoidance, while others employed a help-seeking coping strategy in which they accessed a variety of sources (eg, the internet, Hepatitis C helplines, and courses) to gain as much knowledge as they could to make informed choices about their treatment.
  • Facilitators of treatment adherence and completion: patients emphasized the necessity of having supportive people (spouses, friends or children) available when undergoing treatment for chronic hepatitis C. For most patients, social support helped them deal with the challenges of the adverse treatment side effects. However, for some patients the side effects prevented them from seeking support because they were too depressed to socialize. Maintaining secrecy about their HCV status due to shame and fear of stigma prevented some patients from obtaining support from others. Patients used a range of adaptive and maladaptive coping strategies, including physical exercise, legal and illegal substance use, to help manage adverse effects associated with treatment. Balancing work and treatment was challenging for patients and in some cases they stopped working so they could complete the treatment.
  • Barriers to treatment adherence and completion: patients reported a range of barriers to adhering to treatment, including the side effects of the medications, the complicated dosing schedule, a lack of social support and limitations of the medical system. Taking time off work to spend hours in a clinic waiting room was a major barrier for patients who had jobs.

While the authors state that the results of their study are consistent with those of similar international studies, they also note their novel finding that shame and stigma can motivate treatment uptake. The shame and stigma may be due to the patient’s appraisal of the severity of the threat of chronic hepatitis C and their confidence that they can effectively overcome it. If a patient does not believe they can successfully endure the side effects and complete treatment, they will most likely avoid it.

A recurrent theme in this study was the need for more tailored treatment, instead of a one-size-fits-all approach. Patients expressed a desire for personalized advice based on their level of activity, health, lifestyle, social, and employment situation. Clinics with limited resources, poor funding and inflexible hours can negatively affect adherence and treatment outcomes for patients with chronic hepatitis C. In this study, the public clinic environment itself was a barrier to communication with healthcare professionals. Crowded clinics with insufficient staff resulted in long wait times and rushed interactions between patients and physicians. In addition, inflexible clinic hours made it difficult for those in full-time employment to attend appointments.

As new HCV treatments become available it will be important to monitor patient adherence and identify groups who may need extra support. The authors conclude that in patients with suboptimal adherence, one approach would be for clinicians to recognize and address psychological and social factors that impact patients’ treatment adherence and completion.

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