Direct-acting antiviral (DAA) therapy has revolutionised the treatment of hepatitis C (HCV). Current treatment regimens are highly efficacious, with almost all patients receiving DAA therapy achieving a sustained virologic response (SVR) or ‘cure’. The literature to date has focused primarily on the physical health benefits of viral eradication and lacks qualitative assessments of the impact of HCV on patients' mental wellbeing or emotional states. Recent studies have demonstrated significant improvements in patient-reported outcomes (PROs) following the achievement of SVR.
Background
Hepatitis C and wellbeing
Many papers have qualitatively explored the impact of receiving an HCV diagnosis during the era of interferon therapy (Tompkins et al, 2005; Treloar and Rhodes, 2009). At that time, understanding a patient's emotional state and mental health was crucial to assess their suitability to receive treatment, as interferon could trigger the onset of depression (Cooper et al, 2018).
Although DAA therapy has not been directly associated with such side effects, an individual's mental health and emotional state can influence adherence to treatment regimens (Polis et al, 2016) so can reduce the likelihood of achieving viral cure.
Furthermore, recent research suggests that chronic HCV is not an asymptomatic condition and can directly induce cerebral dysfunction (Yarlott et al, 2017; Yeoh et al, 2018). Given the disproportionate burden of mental health conditions among this patient cohort, it is important to consider the impact the diagnosis of HCV and treatment can have on the emotional wellbeing of patients.
Patient-reported outcomes, health-related quality of life and patient experience
Numerous studies have demonstrated patient-reported outcomes (PROs) and health-related quality of life (HRQoL) after treatment with DAAs to be superior to those achieved with interferon therapy (Mehta and Dusheiko, 2015; Younossi et al, 2015).
Younossi et al (2016) have demonstrated that the PROs that specifically concern daily functioning and physical activity are most affected by HCV; therefore, it would be beneficial for health professionals to identify strategies to assist patients to overcome such impairments.
The improved patient experience associated with current DAA treatment regimens may contribute to an uplifted emotional state. A good patient experience has been positively correlated with adherence to medication (Doyle et al, 2013) and many patients in our study reported relief and gratitude at not having to undergo treatment with interferon.
Emotional and subjective wellbeing
Moreover, some reports suggest that a negative emotional state can have a deleterious effect on physical health (DeSteno et al, 2013), especially with regard to coronary heart disease (Gianaros et al, 2014). Conversely, an increasing body of evidence suggests that not only do positive emotions protect against ill-health in healthy populations, but they can also delay disease progression in those with long-term conditions (Kunzmann and Wrosch, 2018). Positive emotions could cause an upward spiral not only in physiological responses but also in behaviour, leading to lifestyle modifications (McColl-Kennedy et al, 2017; Frederickson and Joiner, 2018). One patient in our study reported that their health had greatly improved since completing treatment and that they were subsequently able to lose weight.
It has also been suggested that experiencing positive emotions can enable individuals to widen their range of coping strategies to develop greater resilience during times of stress (Frederickson, 2001). This may be beneficial in ensuring that patients who experience a higher burden of comorbidities remain engaged with healthcare. Furthermore, there is recent evidence supporting the belief that positive emotions or better emotional regulation can confer physical health benefits, potentially reducing high-risk behaviour (Hopwood et al, 2015; Weiss et al, 2015).
Self-esteem and self-efficacy
From an economic perspective, the benefits associated with the eradication of HCV are clear; people who receive early curative DAA therapy require reduced disability and health spending than untreated individuals or those who are treated late in the disease course (Connolly et al, 2018).
Rejoining the workforce has the additional benefit of positively influencing subjective wellbeing (Stam et al, 2016). This can enhance self-esteem and act as a protective factor against stressors. Promotion of positive self-esteem has been described as a ‘broad spectrum approach for mental health promotion’ and can influence self-efficacy (subjective evaluation of control over a specific behaviour) (Mann et al, 2004). Improvements in self-esteem were reported in our data.
Many patients attending the author's clinic have described getting a new lease of life, feeling transformed or, more generally, ‘feeling better about [themselves]’.
Methods
We sought to explore the feelings of patients with HCV before, during and after DAA therapy. Ethical approval was not sought. Assessment of patient experience is a specific requirement of the HCV Commissioning for Quality and Innovation (CQUIN) system.
Over a 6-month period, 178 patients with HCV attending the viral hepatitis outpatient clinic at a London hospital verbally consented to participate. A single question was posed: ‘How do you feel about your diagnosis of hepatitis C today?’ Patients were advised to give one word answers.
Responses were transcribed verbatim then thematically coded by the overriding emotion of the response, which was then assigned as being positive, negative or neutral. Finally, results were visualised using WordArt software.
Results
Although patients were asked to provide one-word answers, only 28 responded in this manner; the vast majority chose to express their feelings in sentences. The number of patients who declined to participate was not recorded.
The images depict the evolution of patients' perceptions of the impact of HCV on their wellbeing during the course of DAA therapy. The most frequently experienced emotions or feelings are shown in Figure 1. Responses before treatment were predominantly negative, often describing the fear of contagion and feelings of isolation, secrecy and loneliness. After treatment, many patients described feeling positive and motivated.
Discussion and limitations
The increase in positive emotions experienced after HCV treatment may be key to ensuring that patients who have a higher burden of comorbidities remain engaged with healthcare services.
The patient population surveyed was almost exclusively outpatient; a very small number of prisoners also participated. Numbers were too low to indicate significance and therefore further investigation may be warranted in these and other outreach environments. Increasing evidence supports the belief that positive emotions confer physical health benefits, potentially reducing high-risk behaviour which may be of particular relevance when treating people who inject drugs.
Furthermore, no patients who had relapsed were surveyed. Arguably, one might expect this population's experience of treatment to differ from that of individuals who achieved cure and therefore their experience could benefit from better representation.
Participants' week of treatment was not recorded so it was not possible to see at what point in the treatment journey patients' outlook about their diagnosis changed.
Conclusion
The literature is lacking with respect to qualitative reports of the impact of the diagnosis and treatment of HCV on patients' emotional wellbeing. There is, however, clear evidence that achievement of SVR is associated with significant improvement in PROs, HRQoL and work productivity (Younossi et al, 2018). In our study, treatment of HCV had a transformative effect on patients' perception of the impact of HCV on their wellbeing. Perceptions of HCV before treatment were generally negative; however, during treatment and after treatment, patients frequently described a more positive outlook on life.
The transformation in emotions as a result of HCV therapy may help to promote and facilitate engagement of patients with other health services, such as substance misuse or mental health teams. Additionally, the emotional benefits may be the unique selling point of newer treatments. The possibility of feeling happier and no longer carrying the burden of stigma and worry may be more attractive to some patients as the medicalisation of a health problem and its consequences can seem very abstract or confusing whereas emotional benefits, while intangible, are easier to comprehend.
As we move towards an era of achieving the World Health Organization's (WHO) goal of HCV elimination as a public health threat by 2030 (WHO, 2016), a broader view must be taken of the benefits of HCV eradication on patients' emotional wellbeing and mental health.