Beyond clinical outcomes: the social and healthcare system implications of hepatitis C treatment

Participants included in this study were aged between 25 and 67 years, were either injecting opioids or stimulants regularly (at least once a week), injecting occasionally (less than once a week) or had previously injected opioids or stimulants. The participants had also received a confirmed diagnosis of hepatitis C (self-reported) and completed DAA treatment. Participants were incentivised to take part in the study in the form of vouchers. Each participant was offered physical or digital vouchers (supermarket or Amazon) worth 50 euros (£50 in the UK).

The aim was to recruit eight injection drug users per country in the UK (Brighton and Blackpool), France (Montpellier and Marseille), Germany (Essen and Cologne), Italy (Rome) and Spain (Bilbao), and six injection drug users per country in Portugal (Lisbon and Porto) and Switzerland (Lugano). Recruitment channels in these countries included patient associations/organisations, referrals from healthcare professionals (HCPs), recruiter panels (local databases of patients and HCPs from a variety of specialties), patient referrals and online campaigns. Invitations to participate in the survey were sent via these channels in September 2018. A team of local fieldwork partners/recruiters with experience in healthcare market research conducted recruitment in each of the countries. Physicians (from the recruiter panels) and patient associations/organisations were contacted by email or telephone to invite them to assist with patient referrals. In this communication, they were provided with a letter detailing information about the study, invited to help refer suitable patients and given details of the referral incentive. The incentive consisted of donations ranging from 100 to 1000 euros or £100–£1000 in the UK (depending on how many participants were referred) to charities and addiction centres for their support in referring participants. Physical or digital vouchers (supermarket or Amazon) worth 50 euros (£50 in the UK) were offered to participants who referred other participants to the survey. In Portugal, there were no incentives given for referrals due to country regulations. No healthcare professionals were paid any referral incentives. Physicians were invited to tell patients about the study and provide them with the recruiter’s contact details. Patients were free to contact the recruiter if they were interested in participating. The recruiters also advertised the study and provided information about how to take part via various channels including the recruiter panel website, social media and patient association forums, newsletters and websites.

The survey questionnaire was developed by Incite, an independent international market research consultancy (Supplementary File 1). The authors, who have a wide knowledge of hepatology and addiction, contributed to the development of the questionnaire and decisions on which outcomes to measure. They reviewed the final version to ensure alignment with the research objectives and that the questions were appropriate for participants. The survey comprised of 25 questions relating to participants’ sociodemographic characteristics, injecting behaviours and HCV treatment. The survey also included seven questions on the perceived impact of HCV treatment on different aspects of the participants’ lives. The survey was hosted online on the Confirmit platform.

Once participants had agreed to participate, the online survey was conducted in-person (as a face-to-face interview) in the native language at a convenient location (e.g. a café, HCV nurse’s office, rehabilitation centre, drug addiction clinic or patient’s home). The interviews were carried out by moderators (non-HCPs) with experience working in healthcare market research, including patient research. All moderators had received training on how to ask questions on topics of a sensitive nature. At the beginning of every interview, participants were reassured on the anonymity of their responses to encourage open and honest feedback. All responses provided by the participant were inputted onto a tablet or laptop by the moderator. Data were collected on the Confirmit platform. Incite researchers and analysts collated and analysed the data using Q Research Software.

The surveys were carried out from 13 September 2018 to 11 April 2019 and took 30 min to complete on average.

In this study, 124 participants completed the survey questionnaire. The target for the minimum number of participants per country was met with 100 respondents from the UK, Germany, France, Italy and Spain (20 per country), 15 from Portugal and 9 from Switzerland. Of the 124 participants who completed the survey, the majority (75%) were male and aged over 44 years old (69%). Many received a confirmed HCV diagnosis before 2008 (73%) and concurrent illnesses were common (Table 1). Overall, 65% of participants were using opioids and/or stimulants at the start of HCV treatment, and the other 35% had a history of injection drug use. Most participants were recruited through a patient association/organisation (62%) or through a referral from an HCP (20%). The majority (78%) received treatment less than 3 years ago and treatment was most often received from a secondary care hospital (73%).

Participants reported on the impact (significant positive, some positive, some negative, significant negative or none) of HCV treatment on various mental and emotional treatment-related outcomes (Fig. 1a). A positive impact (defined as either a significant positive impact or some positive impact) with HCV treatment was reported by a high proportion of participants on the following outcomes: outlook for the future (79%); self-esteem (73%); ability to plan for the future (69%); belief in their abilities (68%); and confidence (67%). A small number of participants reported a negative impact (defined as either some negative impact or significant negative impact) on psychological health (3%) and their ability to be open with others (1%). For all mental health-related outcomes except psychological/mental health, the percentage of people who reported a positive impact with HCV treatment was higher in participants who no longer used opioids/stimulants at the time of the survey compared with those who did (Fig. 1b).

For physical health, a positive impact on energy levels and fatigue/tiredness with HCV treatment was reported in 59 and 53% of participants, respectively (Fig. 1a). Few participants reported a negative impact on their physical wellbeing, with the most common negative outcomes being tiredness/fatigue (6%) or inability to maintain a healthy weight (6%). Additionally, most participants (82%) reported that HCV treatment had no impact on pain. Among participants who used opioids/stimulants at the start of therapy, the parameter with the greatest numerical difference between participants who no longer used opioids/stimulants at the time of the survey and those who did was the ability to maintain a healthy weight (44% compared with 30%) (Fig. 1b).

Over half (58%) of participants reported a positive impact in their ability to look after themselves and just under half (47%) reported a positive impact on their ability to fulfil daily commitments to others (Fig. 2). Overall, 46% reported a positive impact on their ability to enjoy/explore new interests and hobbies with many participants starting new activities after completing treatment: 6% started a sport or hobby; 13% obtained a new job; 19% enrolled in an education or training course; and 30% became an advocate regarding HCV and/or drug use (e.g. advising patients, companies or healthcare professionals) (Supplementary Fig. 1). For the parameters related to maintaining personal relationships, 35–41% of participants reported a positive impact with HCV treatment; the majority reported no impact.

There were few changes to the participants’ accommodation before and after HCV treatment: living in their own home from 36 to 44%, respectively; in a family home from 22 to 25%; in shared accommodation from 18 to 13%; in a halfway house from 10 to 9%; homeless from 5 to 2%; rehabilitation/detox centre from 5 to 4%; and in prison from 2 to 0% (Supplementary Fig. 2). Employment status remained largely the same before and after completing HCV treatment: on benefits from 35 to 31%, respectively; out of work from 44 to 41%; employed (full- or part-time) from 24 to 23%; retired from 8 to 7%; and volunteer/peer work from 6 to 5% (Supplementary Fig. 3).

The most common emotions reported by participants after completing treatment were: happy (73%), relieved (71%), optimistic (53%); and proud (53%) (Fig. 3a). Among participants who used opioids/stimulants at the start of therapy, the most common emotions felt after treatment were: relieved (70% in participants who no longer used drugs at the time of the survey, 68% in users at the time of survey) and happy (67% in non-users, 65% in users) (Fig. 3b). The emotions with the greatest numerical difference between participants who no longer used opioids/stimulants at the time of the survey and those who did were: successful (42% in non-users, 19% in users), free (53% in non-users, 24% in users) and optimistic (60% in non-users, 38% in users).

During the survey, 84 participants reported that someone else encouraged them to start treatment. Of those 84 participants: 75% were encouraged by an HCP; 21% by a family member; 19% by a social worker; 18% by a friend; 17% by an advocate or key worker; 12% by their partner; and 11% by one of their peers (Fig. 4).

The majority of participants (≥75%) stated that becoming aware of treatments that were effective and well tolerated, as well as understanding the potentially severe consequences of HCV, were their main reasons for starting therapy (Fig. 5a). Only 35% of individuals identified that suffering symptoms of HCV was a motivation to start treatment. In the sub-population of individuals not using opioids/stimulants at the start of HCV treatment, 71% were concerned about the long-term consequences of the disease (Fig. 5b). For those who were drug users at the start of HCV treatment, the most frequently reported reason to start therapy was ‘to get rid of the virus’. The participants agreed that raising awareness of effective and well-tolerated treatments (98%), raising awareness about the risk and severity of HCV (96%), hearing about the positive experiences of others (94%) and having a supportive HCP (93%) were the factors that were most likely to encourage others to start and complete HCV treatment (Fig. 6). The factor that was the least likely to encourage others was financial payments/incentives (41%).