Listening to both sides: A qualitative comparison between patients with hepatitis C and their healthcare professionals’ perceptions of the facilitators and barriers to hepatitis C treatment adherence and completion

Abstract

This qualitative study compares and contrasts the perspectives of healthcare professionals who treat hepatitis C with those of patients in treatment. Comparative analysis of semi-structured interviews with 20 healthcare professionals and 20 patients undergoing treatment for hepatitis C concluded that patients and healthcare professionals disagreed on the source of communication breakdowns, but both felt that individualised clinical information improved adherence. Stigma was recognised as a barrier to treatment adherence by both patients and healthcare professionals. Limitations of the healthcare system, such as patients receiving inconsistent information and long wait times, negatively impacted both patients and providers.

Keywords

clinician and patient perspectives hepatitis C virus qualitative research treatment adherence

Introduction

Successful treatment of chronic hepatitis C is impacted by both medication adherence (taking all of the medication as prescribed without missing doses) and persistence (completing the full course of antiviral medication) (Evon et al., 2014). Although adherence is critical for patients to achieve a sustained virological response (SVR) or cure (Evon et al., 2014; Grebely et al., 2011; McHutchison et al., 2002; Mulhall and Younossi, 2005), almost half of the patients with hepatitis C have difficulty with both treatment adherence and completion. Until recently, treatment adherence for hepatitis C has been difficult because of interferon side effects and complex dosing schedules (Hauber et al., 2011; Mulhall and Younossi, 2005; Treloar and Rhodes, 2009; Willenbring, 2005). This has been compounded by psychosocial factors including lack of social support, unstable lifestyle, housing conditions, stigma and employment (Brunings et al., 2013; Manos et al., 2013; Treloar and Rhodes, 2009; Willenbring, 2005). With the availability of interferon-free in the near future, all oral combinations of direct acting antivirals (DAAs), treatment duration, complexity and side effects are expected to decrease dramatically (Afdhal et al., 2013). However, while these improvements to pharmacology offer the potential to increase treatment uptake and adherence, psychosocial factors are likely to remain, presenting challenges to interventions aimed at increasing numbers of those who are successfully treated (North et al., 2013).

Identifying the psychosocial factors that influence patients’ adherence to and completion of hepatitis C treatment is critical, but to date, these have not been fully explored. We previously conducted a systematic review that examined the psychological, lifestyle and social determinants of SVR, with treatment completion included as a secondary outcome (Sublette et al., 2013). This review suggested that patients should not be deferred from treatment if they consume 30 grams or lesser of alcohol daily or have psychiatric illnesses, as these groups have comparable SVR rates to control. Importantly, we identified major gaps in the literature on the influence of psychosocial factors such as attitudes or coping skills on treatment uptake, adherence, completion and SVR (Sublette et al., 2013).

To adequately explore the impact of psychosocial factors on patients’ treatment outcomes, the perspectives of both the patient and the healthcare professional are required, although to date, the majority of research has been from the healthcare professional’s perspective (Brunings et al., 2013; North et al., 2014). Few studies have compared the perspectives of patients with hepatitis C and their healthcare professionals, although significant differences have been observed between the perceptions of patients and clinicians regarding the patient’s health, treatment effects and treatment preferences (Cotler et al., 2001; Schackman et al., 2008).

Patients report that their quality of care is compromised by misunderstandings and communication problems with their clinicians (Hopwood et al., 2006; Zickmund et al., 2004), which has been attributed to the patient’s low health literacy. Health literacy is defined as an individual’s capacity to acquire and understand health information in order to make appropriate decisions about their health (Nutbeam, 2008; Smith et al., 2013). Low health literacy is a significant barrier to effective communication between patients and healthcare professionals and has been associated with poor health outcomes (Berkman et al., 2011; Smith et al., 2014).

The findings from our review highlighted the need for further investigation into the effect of psychosocial factors on treatment adherence and completion. We, therefore, analysed the perspectives of both healthcare providers (Sublette et al., 2014) and patients (Sublette et al., 2015) in two qualitative studies, to understand their perceptions of the barriers and facilitators of hepatitis C treatment adherence and completion. Importantly, we observed conflicting views on the perceived importance of patient–provider communication, but agreement on the influence of stigma on uptake and adherence, and the negative impact of healthcare system limitations on both patients and healthcare professionals (Sublette et al., 2014, 2015) prompting the need for a formal comparison of these two studies.

Method

Methodology

An existential phenomenological research design was used. This methodology was chosen for its emphasis on the embodied experience of the individual, that is, the mind–body relationship, and the perception of the individual of themselves and their experience of their health and illness. Phenomenology has been found to be a useful methodology for medical research that allows healthcare professionals to deepen their understanding of their patients’ experience and thereby to improve patient care (Carel, 2011; Greenfield, 2011).

Research design

This study used a qualitative research design comprising in-depth, semi-structured interviews conducted between August and November 2012. There were a total of 40 participants: 20 patients, 10 clinicians and 10 nurses from New South Wales (NSW) and Victoria. Two papers reporting the qualitative data of patients’ and healthcare professionals’ perspectives were published elsewhere (Sublette et al., 2014, 2015).

Participant recruitment and procedure

Thirty-six interviews were conducted face-to-face and four interviews were conducted via telephone in private interviewing rooms at the Sydney hospitals by the first author (V.A.S.). Participants read a study information statement and gave informed consent before engaging in a 30- to 60-minute recorded interview. Recorded interviews were professionally transcribed and checked twice for accuracy. Identifying features in all transcripts were removed to ensure participant anonymity and confidentiality.

Healthcare professionals

A purposive sample of 10 specialist clinicians (gastroenterologists and infectious disease specialists) and 8 nurses was recruited from two major hospitals in Western Sydney using direct approach and snowballing techniques. One nurse each was recruited from Melbourne and regional Victoria through advertisements that the researcher placed on the Australasian Hepatology Association website, the peak professional body representing hepatology nurses and allied health professionals who treat viral hepatitis in Australia and New Zealand. To be eligible for participation, clinicians and nurses needed at least 1 year experience treating hepatitis C. All but two participants who were approached to give an interview accepted. The characteristics of the healthcare professionals have been reported previously and are reproduced for ease of readership (Table 1).

Table 1.

Characteristics of participants: healthcare professionals.

	Physicians (n = 10)	Nurses (n = 10)
Gender
Female	5	9
Male	5	1
Age (years)
25–29	1	1
30–34	2	2
35–44	5	2
45–54	1	4
55–64	1	1
Years in practice
1–9	3	3
10–19	5	2
20–39	2	5
Years working with hepatitis C
1–9	7	5
10–19	2	5
20–39	1	0

Source: Sublette et al. (2014).

The interviews followed a topic guide informed by our recent literature review on hepatitis C treatment adherence (Sublette et al., 2013). Examples of topic guide questions for healthcare professionals are as follows: ‘What is your definition of treatment success?’ and ‘What do you feel are the facilitators and barriers to adherence and completion for patients who are treated for hepatitis C?’.

Patients

Patients were recruited during their visits to liver clinics in two tertiary, metropolitan-based hospitals in Sydney, Australia. Nurses and clinicians provided a study flyer to patients, and those who agreed to the study were then introduced to the researcher. Patients at all stages of treatment were eligible to participate, regardless of clinical progress or adherence levels. More than half (60%) of patients who were provided with a flyer agreed to participate in the study. Criteria for participation were as follows: the ability to speak and comprehend conversational English, currently receiving treatment for hepatitis C or participation in a treatment programme in the previous year and above 18 years of age. People co-infected with human immunodeficiency virus (HIV) or hepatitis B virus were excluded. Baseline characteristics of the patients have been reported previously and are reproduced for ease of readership (Table 2).

Table 2.

Characteristics of participants: patients.

Mean age (years)	52 (range: 35–69)
Year of HCV diagnosis	Average: 10.5 years ago^a
Gender
Male	18 (90%)
Female	2 (10%)
Relationship status
Single	6 (30%)
Married/living with partner	9 (45%)
Widowed	1 (5%)
Divorced	4 (20%)
Ethnicity
Aboriginal	1 (5%)
Black African	1 (5%)
East-Asian Chinese	1 (5%)
Hispanic	1 (5%)
South Asian-Indian	1 (5%)
White Caucasian	15 (75%)
Highest level of education^b
Year 10 (Junior secondary school)	11 (55%)
High school certificate (Senior secondary school)	2 (10%)
TAFE (Trade college)	3 (15%)
Diploma (TAFE or university)	3 (15%)
Undergraduate (university)	1 (5%)
Employment status
Full time	10 (50%)
Part time	1 (5%)
Unemployed	9 (45%)
Treatment status
Starting (first 2 weeks)	1 (5%)
In progress	15 (75%)
Completed	4 (20%)
HCV genotype
1	12 (60%)
2	1 (5%)
3	7 (35%)
Treatment
Interferon + ribavirin only	11 (55%)
Interferon + ribavirin + boceprevir	7 (35%)
Interferon + ribavirin + telaprevir	2 (10%)
Planned length of treatment (weeks)
24	6 (30%)
48	14 (70%)

Source: Sublette et al. (2015).

HCV: hepatitis C virus.

Calculated on 17 participants, as three patients’ diagnosis year was unknown. Years were based on interview year of 2012.

Australian educational classification system.

Examples of topic guide questions for patients are as follows: ‘What is the hardest thing for you to cope with related to your treatment?’, and ‘What has your treatment experience been like so far?’.

This study received ethical approval from the Western Sydney Local Health District and the University of Sydney Human Research Ethics Committee.

Data analysis

Framework analysis method, a matrix-based approach that develops thematic categories, was used to analyse the data (Dixon-Woods, 2011; Ritchie et al., 2003). It enables questions or issues identified in advance to be systematically considered in the analysis, while maintaining enough flexibility for data saturation of patterns or themes that are identified during interviews (Ritchie et al., 2003). This resulted in themes that were driven by a combination of our study aims of exploring the facilitators and barriers to treatment adherence and completion, and other novel findings that arose spontaneously through the interview process.

This study followed the five steps of framework analysis:

Familiarisation with the data;

Creating a thematic framework by grouping response types into major headings and subheadings;

Indexing/coding;

Charting/mapping;

Interpreting the data (Ritchie et al., 2003).

In this article, we combined the patient and health professional data and expanded the analysis to compare and contrast how healthcare professionals and patients viewed the factors that influence the hepatitis C treatment experience.

Rigour was achieved in this study by ensuring findings accurately reflected the data through the process of sharing and discussing transcripts and theme development with authors to uncover any biases or assumptions in content interpretation and analysis. Recorded interviews allowed repeated verification of the data, and detailed patient quotes confirmed that the participants’ perspectives were accurately presented. Consistency was maintained by documenting research processes and maintaining transparency in relation to assumptions, methods and procedures throughout the study.

Results

Analysis of the combined dataset from patients and healthcare professionals identified four overarching themes: (1) communication between patients and healthcare professionals, (2) perceived and experienced stigma from having a disease associated with injecting drug use, (3) social support and (4) limitations of the healthcare system.

Both patients and healthcare professionals agreed that social support plays a critical role in patients’ adherence and completion of treatment, and our previous reports have discussed this in detail (Sublette et al., 2015). Hence, in this article, we explored the topics of communication, stigma and limitations of the healthcare system, focusing in particular on areas of alignment or contrast between the perceptions of healthcare professionals and their patients.

1. Communication between patients and healthcare professionals

Communication between the healthcare professional and patient was a major theme that was identified as either a facilitator or a barrier to treatment adherence and completion, depending on its effectiveness. Key influences on communication were patients’ health literacy, the quality and quantity of information provided and the provision of personalised clinical feedback.

(a) The influence of patients’ health literacy skills on communication

Healthcare professionals were concerned that some of their patients may have an insufficient level of education and health literacy to understand the information they were provided about hepatitis C and the treatment programme.

Some clinicians reported that their patients’ inability to adequately understand and process health information attenuated the effectiveness of their communication and felt that providing patients with a full disclosure of their treatment progress would confuse them or was beyond their level of understanding. These assumptions resulted in one clinician reporting that she may withhold information or share only a minimum of detail with some of her patients:

… We don’t want to hide things from them, but at the same time, we don’t want to overload them because you can just see that their eyes will start to glaze and they don’t understand; they get really confused and they mix things up. (Female clinician, age 40)

From the patients’ perspective, the clinicians’ inaccurate assessment of their level of understanding and subsequent withholding of information were the primary causes of poor communication between patient and provider. Clinicians’ assessments of their patients’ ability to understand health information were perceived as inaccurate and demeaning by some patients, who resented information being withheld from them. One patient described feeling angry that his intelligence was discredited when a clinician would not offer detailed answers to his questions:

I’ve got to know everything, the ins and outs – and I could tell by the way he looked at me … because they look at you without realising that – saying ‘I’ve spent nine years studying this liver and I still don’t understand it, how am I going to explain it to you in five minutes?’ And they just don’t want to get into a deep and meaningful conversation about your liver because they underestimate your intelligence straight away. (Male patient, age 50, treatment completed)

(b) Time pressures leading to inadequate information provision and poor communication

Time pressures on healthcare professionals negatively impacted communication between provider and patient and the quality and quantity of the information healthcare professionals provided. Both patients and healthcare professionals agreed that patient care deteriorated when clinicians lacked time to adequately communicate with them. Clinicians in busy clinics reported that time pressures prevented them from assessing patients’ health literacy or delivering health messages in a language that the patient could understand. Use of medical jargon without clarification and rushed encounters that did not allow patients’ questions to be answered properly led to confusion and disappointment, including one patient who successfully completed treatment, but felt dissatisfied that he did not have enough time with the clinic specialist:

I saw the doctor once – yeah, very disappointing. … I had hundreds of questions [and I] wanted to talk to the doctor about it, because he was the specialist … you get your script, but you don’t get an opportunity to talk to him, because he’s – you can see the clinic’s chockers [busy] … But I [didn’t get the questions answered]. I’ve seen the doctor once and I’ve finished the program. (Male patient, age 50, completed treatment)

Healthcare professionals also reported heavy workloads, and the hurried pace of large clinics was a barrier to good communication with patients:

Time is a huge factor. I mean, ideally we would see less patients to spend more time on going through things that they can understand better and retain. And that goes back to the way we triage our clinics, I think. (Male clinician, age 27)

Patients and healthcare professionals agreed that personalised clinical feedback – that is, feedback specific to the patient’s treatment plan and medical results – was both a motivator and facilitator for patients’ maintained adherence to treatment. Healthcare professionals observed patients’ increased optimism and resolve to continue treatment when clinical information was shared with them:

I do a flow chart of their blood tests so I can show it to them each visit, how much progress they have made, each time point, so that encourages them … They look forward to looking at the chart every time they come, to see how well they have done. (Female nurse, age 55)

And that’s why it’s important to give them feedback, fair feedback, that if they’re responding, this is an excellent motivator. So … a patient can be at week 12 of their treatment and struggling. You pick up the phone and tell them, ‘Look, I’ve got great news for you. There’s no detectable virus in your blood.’ They’ve got a spring in their step because they know their treatment is not in vain; that it’s actually doing something. (Male nurse, age 42)

Receiving personalised information about clinical results such as liver enzyme levels and hepatitis C viral load was critical for most patients, regardless of whether indicators were in a positive direction or not. Receiving detailed clinical information paired with a visualisation of the effects of treatment on their bodies gave patients a better perspective of their health outlook and helped them feel more informed and in control:

They let you know exactly where you stood and they always showed me all my blood tests and if they were right, wrong, too low, too high, they were telling me all the way from the beginning, which was good. (Male patient, age 57, treatment in progress)

Well, after the first three months, you start off – it’s annoying. It’s good to get that – it’s clear. That gives you more incentive to keep going. But it was that you know it’s worked, so it gives you an incentive … Yeah, every now and again you think, oh, I’m sick of this. But once it’s worked, why would you stop now? (Male patient, age 51, treatment in progress)

2. Perceived and experienced stigma as a barrier to treatment adherence and completion

Stigma was reported by patients to negatively impact their ability to access social support, damage workplace relationships, compromise their job security and influence early discontinuation of treatment. However, in this study, patients did not have to actually experience stigma to suffer from its effect; fear of stigma was sufficient. Non-disclosure due to fear of workplace discrimination made it difficult for patients to maintain regular dosing schedules and refrigerate their medication, while the fear of social ostracism prevented patients from socialising and reaching out to others who might otherwise be valuable sources of support:

I haven’t told my friends I’ve got anything of this sort, until I’ve done the treatment. … Probably they would associate this to HIV and say … it’s very related, then they would say, this guy is very promiscuous and he’s got this from that, and it’s not good in our culture to have that kind of thing. So I have kept it to myself. (Male patient, age 43, treatment in progress)

Stigma in the workplace is another barrier to treatment adherence and completion, as discrimination and bullying can cause patients to terminate their treatment prematurely. A clinician in this study described the experience of one of his patients who revealed his hepatitis C status to his work colleagues and experienced such intense bullying that he discontinued treatment, even though the clinical results were favourable:

… One of my difficult patients I had in the last couple of weeks, actually, was a guy who decided to pull out of treatment nine weeks into the treatment and he had a negative hepatitis C test, eight weeks after starting treatment … His main issues were that people at work found out that he had hepatitis C and felt that he was incompetent, or not capable of doing his job, even though he’d been at the job for 20, 25 years … So they were actually bullying him … (Male clinician, age 35)

3. Limitations of the healthcare system

Although the healthcare system is designed to facilitate wellness and health among the ill, there are fundamental obstacles in this system, such as lack of resources, time and continuity of care that create barriers to uptake of treatment, adherence and completion for patients with hepatitis C.

(d) Lack of resources resulting in clinic congestion and long wait times

Inadequate staff numbers reducing the amount of time clinicians spend with patients and long wait times were perceived to have a negative impact on patient adherence by healthcare professionals:

If you make them sit around in a clinic waiting for two hours before they see someone, the compliance is going to be very low, which is often what happens. (Female clinician, age 37)

However, patients who desired treatment felt that enduring inconvenient and long wait times was an inherent part of receiving treatment in the public system:

Well it’s just the same, more people than there [are healthcare professionals] … you’ve just got to sit there and wait your turn, nothing you can – and if there’s a staff shortage, well, you’ve got to wait longer, yeah. (Male patient, age 62, treatment in progress)

(b) Patients receiving inconsistent and conflicting information from multiple clinicians

In the public clinic system, patients are seen by a variety of clinicians with varying levels of experience and expertise, including trainees, experienced clinicians and professors. Lack of consistency and conflicting information provided by multiple clinicians was a source of confusion and frustration for both patients and healthcare professionals.

Patients found this lack of consistency, which sometimes resulted in conflicting information being given, upsetting and ‘disheartening’, particularly when one clinician was optimistic, while another painted a very bleak picture of treatment:

[I was] wondering if it was going to work and how crook [sick] I’d get … some of the doctors I saw here before I started my treatment [said] it’s not going to be a walk in the park and that sort of disheartens you, but you just think, well another doctor says another story to me. Two different, conflicting stories I got. (Male patient, age 51)

Healthcare professionals agreed that a potential barrier to positive outcomes for patients was the lack of continuity that resulted from patients interacting with clinicians with varying levels of experience:

And it’s a bit hard, I mean, ‘cause sometimes you may end up not seeing the same patient immediately after you’ve assessed them … some patients can find that a bit frustrating … I know it’s a busy clinic that you have to wait … an hour and a half to actually get in. When you get in, you may not be seeing a familiar face, which is difficult. And the different doctors are also at their different stages, so one day you may be seeing the professor … but then on a separate day, you may be seeing the intern … which may be influencing treatment … (Female clinician, age 31)

Specific barriers that we’ve got in our clinic; our patients actually see a different clinician every time they come here, possibly. Out and out the biggest improvement that could be made in our clinic is for patients to see one clinician consistently. (Nurse, age 49)

Discussion

After comparing the views of patients and healthcare professionals, we identified three overarching themes that were perceived by both groups to be facilitators and/or barriers to patients’ adherence and completion of treatment for hepatitis C: communication, stigma and limitations of the healthcare system.

Both patients and healthcare professionals reported that communication difficulties negatively impacted patients’ treatment experience. This is consistent with previous research, as a recent review of 46 studies found significant disparities between patient and clinician perspectives, which negatively impact the quality and quantity of communication between patient and provider (Muhlbacher and Juhnke, 2013). Other barriers to communication, such as low health literacy, compromise some patients’ ability to comprehend and recollect information provided to them about their disease, resulting in lower compliance, less engagement with healthcare services and less involvement in decision-making processes about their health (Berkman et al., 2011; Smith et al., 2013). Poor patient–clinician communication has been associated with lower patient satisfaction and medication adherence (Vieder et al., 2002) and correlated with non-response to antiviral therapy in patients with hepatitis C (Zickmund et al., 2004).

Healthcare professionals can minimise this problem and increase the effectiveness of their communication using strategies shown to improve patient–provider communication. These include the following: avoiding or clarifying medical jargon, using the ‘teach-back’ technique (asking patients to state in their own words instructions, concepts or decisions just discussed) and encouraging questions from patients (Smith et al., 2013; Wolf et al., 2007).

Healthcare professionals who provide individualised information such as clinical feedback have found this type of information to be important and encouraging for patients, resulting in improved adherence and outcomes (Onyirimba et al., 2003). Consistent with this, both patients and healthcare professionals in our study felt that clinical information was motivating and helpful to patients. It was perceived to increase a patient’s capability to cope with the treatment side effects and maintain adherence to their programme. Generic information, however, was not well received. Some patients complained of information overload, that they were given more information on hepatitis C than they were comfortable receiving (Sublette et al., 2015). This wide range of abilities and expectations highlights the importance of the skills that health professionals need to identify patients who might have difficulties understanding and processing information and provide them with the amount of information that they desire.

Stigma negatively impacts the quality of communication between healthcare professionals and patients with hepatitis C (McGowan and Fried, 2012; Zickmund et al., 2004), resulting in reduced uptake of treatment and decreased adherence (McGowan and Fried, 2012; Stewart et al., 2012; Treloar et al., 2013). Stigma is commonly applied to people living with hepatitis C (Ablon, 2002), due to its association with injecting drug use (Hopwood et al., 2010; Modabbernia et al., 2013; Treloar and Rhodes, 2009). People with hepatitis C are often judged as having become infected as a result of immoral or deviant behaviour, are considered contagious and, therefore, felt to be a threat to other members of the community (Ablon, 2002; Zacks et al., 2006). Poor communication with their healthcare professionals has been reported to reinforce feelings of stigmatisation by 33–41 per cent of patients with hepatitis C, who feel rushed, misled, ignored or treated disrespectfully by healthcare providers (McGowan and Fried, 2012; Zickmund et al., 2004).

Stigma in the workplace was problematic for patients in this study, who encountered negative reactions following disclosure of their hepatitis C. This is consistent with previous findings that a majority of people with hepatitis C experience discrimination and stigmatisation from their peers after exposing their status (Conrad et al., 2006; Manos et al., 2013; Zickmund et al., 2003). Fear of stigma was just as limiting as actual stigma, as it prevented patients from reaching out to others for support.

Stigma is a social construct and intervening at an individual level only is inadequate for implementing change (Heijnders and Van Der Meij, 2006). To address this, stigma-reduction strategies can be implemented at intrapersonal, interpersonal, community, institutional and governmental levels (Heijnders and Van Der Meij, 2006). Information provision alone has been found to be insufficient to reduce stigma, but multi-component interventions hold much more promise (Brown et al., 2003). Multi-level stigma-reduction strategies including counselling, cognitive-behavioural therapy, support groups, education, policy development and legal interventions are needed to fully change community attitudes and the stigmatisation of people with hepatitis C (Heijnders and Van Der Meij, 2006).

Finally, limitations of the healthcare system were noted to impact the quality of patient care. The clinic environment was reported by both clinicians and patients in this study to be a barrier to treatment adherence and completion due to resource shortages, time pressures and clinicians’ rotating shifts that lead to inconsistent care. These findings are consistent with the literature describing how time pressures, high workloads and inadequate resources for doctors can lead to burnout (Lee et al., 2013). A consequence of clinician burnout is depersonalisation, resulting in detached feelings towards patients – and decreased quality of patient care (Lee et al., 2013).

In healthcare settings where there is a lack of multidisciplinary resources, clinicians and nurses have been reported to intervene for patients in ways that move them outside of their area of expertise – such as providing psychological assessments and social work interventions. Extra assistance provided to patients such as securing housing, intervening on patients’ behalf with their employers and making extra calls to patients to ‘check in’ with them can result in increased workloads, responsibility and risk for doctors and nurses, as well as impact patient adherence (Sublette et al., 2014). A major barrier to care for patients with hepatitis C has been found to be insufficient resources (Parkes et al., 2006), which not only contributes to suboptimal care but also to considerable stress and burnout for clinicians and nurses (Langballe et al., 2011; Pellegrini, 2007; Shirom et al., 2010).

To our knowledge, this is the first qualitative study to compare the perspectives of patients and healthcare professionals in a typical group of patients with hepatitis C. We were not able to contact patients who discontinued treatment due to patient preference. Therefore, a fruitful area for future research would be to interview patients who have stopped treatment early to gain greater insights into the barriers to treatment continuation. Although our sample was from a specific geographic location and based on self-reported data, the exploration and comparison of patients’ and healthcare professionals’ perspectives can be instrumental in improving treatment outcomes for patients.

Highlighting gaps in understanding between patients and professionals and challenging assumptions of patient preferences allows for better alignment of healthcare delivery to patient needs.

Clinical implications: the future of treatment for hepatitis C

As we enter an era of interferon-free regimens that are easier to administer, with less complexity, a substantial increase in patients eligible for treatment and in-patient demand is likely to exacerbate healthcare capacity issues (Ahn and Flamm, 2014). Treatment for hepatitis C will expand from being administered primarily by specialists such as hepatologists and infectious disease specialists, to primary care providers and those with little or no experience treating hepatitis C. Due to the diverse regimens for different genotypes, varied durations of treatment and the needs of special groups (such as those with advanced cirrhosis), training new healthcare professionals will place a substantial burden on the healthcare system (Ahn and Flamm, 2014).

As such, treatment efficacy will not be enough to ease this burden, as patient outcomes will not improve unless psychosocial issues that are barriers to uptake, adherence and completion of treatment are addressed (North et al., 2013).

Conclusion

This study has identified areas for interventions that target barriers at the patient, healthcare professional, social and healthcare system levels. Implementing stigma-reduction strategies, addressing health literacy issues and improving patient–provider communication are important areas for change at the patient and social levels. At the system level, addressing issues such as time pressure, lack of resources and continuity of care is instrumental in removing barriers to treatment adherence and completion.

Although new therapies can cure more than 90 per cent of patients if taken correctly, a major remaining barrier is treatment adherence. Therefore, targeting psychosocial factors that inhibit treatment adherence and completion may soon become the main priority to increase hepatitis C cure rates in the community.

Footnotes

Acknowledgements

The authors would like to thank all the participants who generously gave their time to be interviewed.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Work on this manuscript was in part supported by programme and project grants from the National Health and Medical Research Council of Australia (358772, 1003767, 1047417 and 1053206) and by the Robert W Storr bequest to the Sydney Medical Foundation, University of Sydney.

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