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The Hepatitis C treatment experience: patients' perceptions of the facilitators of and barriers to uptake, adherence and completion
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our study examines the barriers to and facilitators of interferon-based treatment adherence and completion in a typical group of patients with CHC attending NSW liver clinics.
"Although simplified treatments with fewer side effects could improve adherence rates, psychosocial factors such as forgetfulness, family and work responsibilities, depression, stigma, and low health literacy negatively impact adherence independent of treatment regimen" [and proper education & support services - Jules]
"Our novel finding that shame and stigma can motivate treatment uptake may be due to the patient's appraisal of the severity of the threat of CHC and their confidence that they can effectively overcome it."
"Patients expressed a desire for personalised advice based on their level of activity, health, lifestyle, social, and employment situation. Not only was the content important, the correct amount of information that patients received was critical, with some patients reporting being unable to cope with information overload while others used information seeking as a coping mechanism."
"Personal feedback on clinical progress was reported by many patients to be critical, as it gave them hope and an incentive to continue. Both positive and negative feedback helped patients feel informed and in control. In other chronic medical conditions clinical feedback has been shown to significantly improve treatment adherence and improve outcomes"
"Personalised care for patients includes providing patients with clear and
useful information, engaging in respectful communication, consideration of patients' personal and clinical individuality, and being trustworthy"
"Crowded clinics with insufficient staff resulted in long wait
times and rushed interactions between patients and physicians. Inflexible clinic hours made it difficult for those in full-time employment to attend appointments. This is consistent with previous reports that clinics with limited resources, poor funding and inflexible hours can negatively affect adherence and treatment outcomes for patients with CHC"
AUTHOR SUMMARY:
In this study, treatment uptake for Hepatitis C was motivated by fear and stigma, but in the context that patients felt they could alleviate the threat of the disease and the shame with the eradication of their disease. Better communication about the realistic threat of Hepatitis C could be a useful tool for patients, provided they are also confident that they have a likelihood of success.
This study also suggests that customising the treatment experience may improve patient adherence and completion rates, in which the patients' individual characteristics and diverse needs are considered in their therapeutic plan. Adopting a patient-centred model that integrates each patient's personal needs and life situation into their treatment program could be the next positive step in increasing adherence and completion rates for patients living with
CHC. Additionally, in settings with limited resources, a standardised psychosocial
assessment instrument that identifies patients needing additional support would help to target resources to those most in need.
Despite the increasing availability of interferon-free therapy in the near future, treatment adherence is likely to remain an important issue. Although these regimens will be shorter, with fewer side effects, they may be offered to patients who would not previously have been offered interferon therapy, and treatment may be supervised less closely. Patients failing DAA-based therapy typically acquire drug resistance mutations (Afdhal et al., 2014), which could limit future options for re-treatment. Poor adherence has been identified in research as
a problem for more than five decades, indicating that while treatments are improving, human nature is staying the same (Dunbar-Jacob & Mortimer-Stephens, 2001). To quote Dr. C. Everett Koop, "Drugs don't work in patients who don't take them" (Ho, Bryson, & Rumsfeld, 2009, p. 3028).
Therefore, as new treatments become available it will be important to monitor patient adherence and identify groups who may need extra support. In patients with suboptimal adherence, one approach would be for clinicians to recognise and address psychological and social factors that impact patients' treatment adherence and completion. Ensuring patients have adequate social and emotional support and adaptive coping strategies before treatment initiation, as well as providing practical support, advice, and clinical feedback tailored to individual patient needs, are key to improving health outcomes for patients with Hepatitis C.
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The Hepatitis C treatment experience: patients' perceptions of the facilitators of and barriers to uptake, adherence and completion
Psychology & Health
Victoria A. Subletteab, Sian K. Smithc, Jacob Georgeb, Kirsten McCafferyd & Mark W. Douglasbe*
a Clinical School, University of Sydney, NSW 2006, Australia
b Storr Liver Centre, Westmead Millennium Institute, University of Sydney and Westmead
Hospital, PO Box 412, Westmead NSW 2145 Australia
c Prince of Wales Clinical School, Psychosocial Research Group, University of New South
Wales, Lowy Cancer Research Centre C25, Level 4, Randwick NSW 2052, Australia
d School of Public Health, University of Sydney, NSW 2006, Australia
e Centre for Infectious Diseases and Microbiology, Marie Bashir Institute for Infectious
Diseases and Biosecurity, University of Sydney and Westmead Hospital, PO Box 412,
Westmead NSW 2145 Australia
27 Jan 2015
Abstract
Objective: This study explores the perceptions of patients receiving treatment for Hepatitis C to determine what factors influence their decision to commence treatment, ability to maintain adherence, and complete their treatment program.
Design: Semi-structured interview techniques were used in a qualitative study of 20 patients undergoing treatment for Chronic Hepatitis C (CHC).
Main Outcome Measures: To explore patients' perceived barriers to and facilitators of Hepatitis C treatment adherence and completion.
Results: Analysis of patient interviews identified four key themes: 1) Motivations for commencing CHC treatment - fear of death and ridding themselves of stigma and shame; 2) The influential role of provider communication - patients reported that information and feedback that was personalised to their needs and lifestyles was the most effective for improving adherence to treatment; 3) Facilitators of treatment adherence and completion - social, emotional, and practical support improved adherence and completion, as did temporarily ceasing employment; 4) Barriers to treatment adherence and completion - these included side effects, stigma, a complicated dosing schedule and limitations of the public healthcare system.
Conclusion: To increase treatment adherence and completion rates, a patient-centered approach is required that addresses patients' social, practical, and emotional support needs and adaptive coping strategies.
Although non adherence is often related to side effects (Seeff & Hoofnagle, 2003; Treloar, Rance, Dore, et al., 2013) from interferon treatment, psychosocial factors such as lack of social support, language barriers, unstable housing, social marginalisation, discrimination and employment also negatively affect adherence and will be target areas for interventions when future treatments arrive that have fewer side effects.
from Jules: I would add that adherence is an issue across all diseases & in HIV adherence has received a lot of education & support services for 20 years now in ensure patients are adherent. Many years of adherence education & support programs in HIV I am sure play a large role in the increases in successful treatment outcomes in HIV, as for years now the proportion of patients achieving & maintaining undetectable HIV RNA has been increasing. BUT, in HCV there are many new patients who have never been treated before & so adherence is a new concept to them. As well adherence may be a relatively new concept to clinicians in HCV, perhaps they are not prepared on how to successfully communicate with patients regarding adherence & perhaps patients do not get the message in an adequate fashion.
Our study investigates factors that influence adherence and completion in typical clinic patients by conducting qualitative interviews with a non-specific group of patients with CHC attending a hospital outpatient clinic in metropolitan Western Sydney to: (i) explore the psychological, practical and social issues faced by patients living with CHC during treatment, and (ii) identify ways that healthcare professionals and services might better support patients to improve treatment outcomes.
RESULTS
Twenty interviews were conducted with patients ranging in age from 35-69 years, with a mean age of 52 (Table 1). Analysis of patient interviews identified four broad themes: 1) Motivations for commencing CHC treatment; 2) The influential role of provider communication throughout the treatment cycle; 3) Facilitators to treatment adherence and completion, and 4) Barriers to treatment adherence and completion.
1) Motivations for commencing treatment
Patients expressed diverse reasons for engaging in CHC treatment. Witnessing friends or family members die from CHC-related cirrhosis or liver cancer instilled a fear of dying in many patients, who felt they had no choice but to have treatment:
I thought I was going to die.... I had Hepatitis, I thought I was gone. ...I don't have any choice. If I didn't get treated it's not going to go away... there's no decision to be made, you have to do it.
(Male, 49, treatment in progress)
...I read all the information, have this disease, it's very dangerous. I mean, it's a long time, I mean, not like straight away, but for long-term, it's dangerous for me. So I was thinking that time if there was treatment then I have to go with that, because there is no other choice. And die soon. So that's why I just go with the treatment...I just want to live...longer.
(Male, 44, treatment in progress)
In addition to fear, 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. For some of those who completed treatment, this belief became a reality:
But I suppose, because it's a disease and it's in me I suppose the one thing that I do feel is dirty and unclean. Yeah, all the time. So as soon as it's gone, I'll feel all right.
(Female, 52, treatment in progress)
I always felt, because I always feel obligated to divulge it to a doctor or a dentist, I get embarrassed, but I still say it. But I know there's people - a lot of people have got Hep C that didn't get if from using IV needles - or I don't even know if that's how I got it, I could have got it through tattoos in jail, or, I don't know, but it's definitely got a stigma attached to it, which is gone now.
(Male, 50, treatment completed)
2) The influential role of provider communication throughout the treatment cycle
Providing clinical feedback to patients as they progress through treatment
Communication between patients and physicians impacted both the patients' reasons for uptake and perceptions of their treatment experience. Patients who received clinical feedback and personalised information regarding their illness reported the highest levels of satisfaction and motivation to adhere to and complete treatment. Moreover, some patients reported their need to be informed of their clinical progress, whether positive or negative.
I feel better since the very beginning when I was told that after the first six weeks of the treatment, and I had my blood test that there was no virus detected. As long as I am told how I am progressing, and progressing good, bad or indifferent, yeah, that's good enough for me.
(Male, 54, treatment completed)
When I started the program... the viral load was about 1.6. ...Then a month after that it came to about 465,000 and another month after that it came to about 165,000. So I could see that it is dropping, so that also gave me hope.
(Male, 43, treatment in progress)
For some patients, receiving an abundance of generic information on the Hepatitis C Virus (HCV) led to information overload and anxiety. A few patients reported that the materials were overwhelming and raised concerns about their ability to comprehend the information:
And all the information on Hepatitis C, yeah I'm not really interested in that side of it. Sometimes knowing too much, knowing more for me is too much.
(Male, 57, treatment in progress)
I think they're good [informational materials on HCV], as long as you don't get an overload of umpteen sheets and you can get a little bogged down, flicking through them, you think, God, I'm not going to get through this and understand it all...
(Male patient, 62, treatment in progress)
A one-size-fits-all approach to providing information
Patients reported that information was routinely given by health professionals in a one-size-fits-all approach, delivering the same materials and advice to all patients, despite different information needs and coping strategies for dealing with information relating to their disease and course of treatment:
The information [I get only focuses on] medication and the treatment... [but]
something...outside [of that] for example, I usually play sport, right, with the treatment, can I still play... That kind of information I don't have.
(Male, 49, treatment in progress)
Some patients coped with their illness by denial or avoidance, others employed a helpseeking coping strategy in which they accessed a variety of sources (e.g. the internet, Hepatitis C helplines, and courses) to gain as much knowledge as they could to make informed choices about their treatment.
I'd studied AIDS and Hepatitis and got a certificate...[And] you can look on the Internet and talk to - go to sites, where there are other people who have been through it, or are going through it.
(Male, 47, treatment in progress)
Yeah, they give me some brochures and that, and then I rang up the Hep C helpline and they sent me out some more information on it... Yeah, I try to build up as much information as possible.
(Male, 50, starting treatment)
3) Facilitators of treatment adherence and completion
A broad range of factors were reported by patients to assist with managing their treatment regimens and to cope with adverse side effects. These are summarised in Figure 1(a).
Social and emotional support
Patients emphasised the necessity of having supportive people (spouses, friends or children) available when undergoing treatment for CHC, and how it gave them the strength to continue through difficult times:
I said to my wife, I said, 'I can't deal with this,' but she talked me back around to it and brought me grandkids over and said ... 'You've got to do it'... A very good support system. You need something like that. ...I just wanted to throw it all away, but everybody supported me.
(Male, 57, treatment in progress)
You've got to have people around you. You can't do it by yourself.
(Male, 47, treatment in progress)
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 socialise and felt isolated:
Then I feel down, [because] I want to go with friends, you know what I mean, [but] I don't
want to see them if I feel [like] this.
(Male, 44, treatment in progress)
Maintaining secrecy about their HCV status due to shame and fear of stigma prevented some patients from obtaining support from others:
And there's a few people that I've actually told that I've got this and I'm on - doing treatment, so they know. And it wasn't very lightly that I told people that. So I kept it dark for over 10 years. I never told anyone.... I was ashamed of it.
(Male, 49, treatment in progress)
Coping strategies
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.
I used to walk every morning and every afternoon just for about half an hour and that took my mind off - yeah, well, depression kicks in. They wanted to put me on depression tablets, but I said no... the walking helped a lot because just peaceful time, just walking laps around the oval, and just thinking about other things, you know, where the itch didn't really matter anymore...
(Male, 57, treatment in progress)
Okay. This is how I cope [takes out Panadeine Forte] it numbs me out. ...I've never told the doctor but they never say anything about it. Yet, if I take stuff over the counter... then it starts showing up. I'm actually better off taking those [because they don't show up in blood test results].
(Female, 52, treatment in progress)
Other patients used mental strategies such as reflecting on prior experiences in their lives that were more challenging than the current side effects from treatment.
Well, I had such a bad childhood and such a shocking adolescence, that I actually survived it and I didn't become insane is enough for me. I just think back on that. I got through all of that crap and I survived it.
(Female, 52, treatment in progress)
.........And even the worst days of the sickness of interferon side-effects, they're just still nowhere near as bad as withdrawals of opiates.
(Male, 50, treatment completed)
Unemployment was considered by many patients to be conducive to maintaining
adherence and completing treatment. Attending clinics during business hours made it difficult for patients to maintain a work schedule during treatment.
Balancing work and treatment was challenging for patients and in some cases they stopped working so they could complete the treatment:
........Being on the treatment and working at the same time that is the hardest thing. That is why I put the work on hold at the moment.
(Male, 43, treatment in progress)
..........I have no problems with the issues like of the treatment, but it's just more so, for me, is getting the time from work.
(Male, 49, treatment in progress)
4) 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. These are summarised in Figure 1(b).
Side effects
Side effects were the most challenging aspect of CHC treatment for all patients. Extreme fatigue, nausea, anger, hair loss, rashes, and insomnia were included in a long list of issues patients experienced from their medication.
........Tiredness. Sometimes I don't want to get out of bed sometimes. ...The fatigue on the body is the top one out of everything.
(Male, 35, treatment in progress)
......Initially I experienced dizziness, tightness, vomiting. Fatigue. ...That's why currently I'm not working because ...I find it difficult because of the fatigue. Initially, the dizziness was too much.
(Male, 43, treatment in progress)
Complicated treatment regimen
Multiple daily dosage times, weekly injections, and oral ingestion of up to 19 pills a day for those on triple therapy was a continual challenge for patients, who had to constantly plan ahead to adhere to their dosing schedule. In addition, patients described keeping medication hidden at work to maintain confidentiality, difficulty maintaining refrigeration, forgetting to take their medicine, and getting distracted by everyday life, leading to missed doses:
......The difficult part?... Just watching your times of your meds... Because everything's got to be refrigerated and if I've got to go out in the middle of the day I take the little freezer brick and I wrap the meds up in that but then I've got to remember to take ... that's a little pitfall. I can take the stuff with me and forget to use them anyway.
(Male, 62, treatment in progress)
Limitations of the medical system
The clinic system was also mentioned as a barrier to adherence and completion of treatment.
Taking time off work to spend hours in a clinic waiting room was a major barrier for patients who had jobs. Although many patients reported long wait times as frustrating, most blamed the health system and staff shortages rather than their healthcare professionals, accepting this as the nature of a public health system. One patient described routinely waiting at the clinic
for the entire day to have his blood tests and clinician assessment:
..........Just waiting, but it's a hospital. You know that's going to happen. ...it's sort of badly timed for me ... because I give blood in the morning and then I have to wait to do the afternoon, and I have to come in early enough for the bloods to get [processed].
(Male, 51, treatment in progress)
........That's a pain. I mean, you wait around for hours. I mean, all I wanted today was a result on my blood test, and I've been here for three hours. A couple of hours is a bit much. So I don't know. Write a letter to the health system, I guess. It's not the doctors' fault. It's a funding issue, isn't it?
(Male, 55, treatment completed)
Discussion
This study explored the barriers to and facilitators of treatment adherence and completion for patients living with CHC. Patients described fear and shame as motivations for treatment uptake, although stigma was also a barrier to treatment adherence and completion. Communication between healthcare professionals and patients was a barrier when a patient's health literacy was perceived to be low, and a facilitator when clinicians provided clinical
feedback to patients. Further barriers to adherence included the healthcare system itself due to time pressures, lack of resources, and patients treated by multiple physicians in the public health system.
Patients in this study described being motivated to engage in treatment by their fear of morbidity and mortality from their disease, and the stigma and shame attached to CHC. In previous reports, patients avoided treatment for CHC due to fear of stigma and discrimination, as well as fear of the treatment, including side effects, injections and blood tests (Dai, 2010; Mehta et al., 2008; Searson, Engelson, Carriero, & Kotler, 2014; Yan, Wong, Wong, & Chan, 2010; Yap et al., 2014).
Our novel finding that shame and stigma can motivate treatment uptake may be due to the patient's appraisal of the severity of the threat of CHC 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. This cognitive appraisal process has been described by theoretical models of fear and behaviour change such as the Protection Motivation Theory (PMT) and the Extended Parallel Process Model (EPPM). The PMT postulates that a perceived threat is first appraised in its severity and is acted upon if the
patient feels they can successfully overcome it, and the EPPM further develops the idea that danger control motivates people to take a recommended action only if they believe it will be effective and feasible (Ruiter, Kessels, Peters, & Kok, 2014).
A recurrent theme was the need for more tailored treatment, instead of a one-size-fits-all approach. Patients expressed a desire for personalised advice based on their level of activity, health, lifestyle, social, and employment situation. Not only was the content important, the correct amount of information that patients received was critical, with some patients reporting being unable to cope with information overload while others used information seeking as a coping mechanism.
Whether a patient seeks or avoids information about their illness is determined by a multitude of factors including: their culture (do they have family members who collect information for them?), environment, social network (do they know others with the same illness?), or a decreased cognitive capacity due to high levels of stress, anxiety, or pain due to illness or medical procedures (Brashers, Goldsmith, & Hsieh, 2002). In addition, patients who feel overwhelmed by information on their illness may have poor health literacy, defined as the skills people need to understand health information and make appropriate decisions
about their health (Nutbeam, 2008). Poor health literacy contributes to declining use of health information and services and negatively affects health outcomes (Berkman, Sheridan, Donahue, Halpern, & Crotty, 2011; Nutbeam, 2008; Nutbeam & Kickbusch, 2000), but its impact in the context of CHC is unknown and warrants further examination.
The information-seeking literature describes preferences for receiving information as a multi-factorial assessment process that people engage in when receiving threatening messages. The nature of the threat, the perception that a particular response will effectively deter the threat (response efficacy), and the patient's beliefs about their ability to produce an effective response (self-efficacy) all combine to influence one's desire to acquire information (Case, Andrews, Johnson, & Allard, 2005). Communication research examining differences
between patients who tend to avoid information versus those who actively seek it found that up to one-third of patients choose to distract themselves from information that they find threatening and out of their control (Case et al., 2005).
Conversely, patients who desire more information may be attempting to reduce their uncertainty. Theories of uncertainty reduction suggest that learning more about their disease would increase certainty and therefore lessen the tension related to the unpredictability of their illness (Case et al., 2005). This assessment
is further influenced by the communication exchange between healthcare professionals and patients, in which patients' communication style and personal characteristics affect the interactions with their physicians. Younger and more educated patients receive more information than older and less educated patients, whose informational needs and wants are often misunderstood by their physicians (Brashers et al., 2002). Patients with submissive and indirect communication styles may also receive less information from their physicians
(Brashers et al., 2002; Case et al., 2005).
Personal feedback on clinical progress was reported by many patients to be critical, as it gave them hope and an incentive to continue. Both positive and negative feedback helped patients feel informed and in control. In other chronic medical conditions clinical feedback has been shown to significantly improve treatment adherence and improve outcomes (Catz, Kalichman, Benotsch, Miller, & Suarez, 2001; Onyirimba et al., 2003).
Changing attitudes toward healthcare and the patient-provider relationship has supported the growth of models of care that provide patients with opportunities to be more active participants in the decision-making processes that concern their individual health needs (Reynolds, 2009). Personalised care for patients includes providing patients with clear and useful information, engaging in respectful communication, consideration of patients' personal and clinical individuality, and being trustworthy (Reynolds, 2009; Suhonen, Valimaki, Katajisto, & Leino-Kilpi, 2007).
Thus, involving patients in health decisions and providing them with clear
communication and useful information are primary components of contemporary patient- centred models of care, which in turn have been found to be associated with improved patient satisfaction, treatment adherence, and clinical outcomes (Ferguson, Ward, Card, Sheppard, &
McMurtry, 2013; Reynolds, 2009; Suhonen et al., 2007). Consistent with reported positive outcomes from patient-centred models, patients in our study who received clinical feedback and information tailored to their individual care reported satisfaction with their care, as well as increased optimism and motivation to continue with their course of treatment.
Patients reported that 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. Inflexible clinic hours made it
difficult for those in full-time employment to attend appointments. This is consistent with previous reports that clinics with limited resources, poor funding and inflexible hours can negatively affect adherence and treatment outcomes for patients with CHC (Nguyen, Dore, Kaldor, Hellard, & Committee, 2007; Parkes, Roderick, Bennett-Lloyd, & Rosenberg, 2006).
Similar to our findings, recent research by Evon, Golin, Bonner, Grodensky, and Velloza (2014) investigated treatment adherence in 21 outpatient liver clinic and clinical trial patients in the USA. They found that social and emotional support provided by family and healthcare providers and good communication with providers were identified by patients as critical in sustaining their resolve to remain adherent. In Evon's study, communication was discussed in
the context of support, but neither the specific effect of clinical feedback nor the amount of information provided on patients' motivation was specifically addressed.
Previous studies investigating barriers and facilitators of adherence have typically
focused on a single dimension such as stigma (Treloar, Rance, & Backmund, 2013) or on specialised groups of patients with CHC such as those in opioid substitution settings (Treloar, Rance, Dore, et al., 2013). North and colleagues conducted focus groups with 48 CHC monoinfected and CHC/HIV co-infected patients. Dominant themes included treatment-related issues such as barriers to care, social factors including the negative impact of stigma, and patients' need for information (North, Devereaux, Pollio, Hong, & Jain, 2014). Congruent
with our study, poor doctor-patient communication was considered a barrier to care and had an impact on patients' desire for treatment. Patients in North et al.'s study expressed a need for more information on Hepatitis C, although information overload and personalized information provision were not explored.
In conclusion, our study examines the barriers to and facilitators of interferon-based treatment adherence and completion in a typical group of patients with CHC attending NSW liver clinics.
In the near future, a range of interferon-free therapies will be available that have fewer side effects, reduced pill burden, and shorter duration of treatment. However, their uptake in many countries will be limited by high cost, with interferon remaining the backbone of therapy for the time being (Pawlotsky, 2014). Rates of adherence to new oral therapies will need to be monitored closely, as comprehensive reviews on adherence have found general
adherence rates to any medication program range from 17% to 80% (Krueger, Berger, & Felkey, 2005), with a tendency to be lower in those with chronic than for those with acute conditions (Osterberg & Blaschke, 2005). Among patients taking single pill, once-daily treatment regimens who have frequent interaction with their healthcare providers up to 40% do not maintain 100% adherence (Osterberg & Blaschke, 2005). Even patients in clinical trials who are carefully chosen and constantly monitored have adherence rates as low as 43%
(Osterberg & Blaschke, 2005).
Although simplified treatments with fewer side effects could improve adherence rates, psychosocial factors such as forgetfulness, family and work responsibilities, depression, stigma, and low health literacy negatively impact adherence independent of treatment regimen (Rintamaki, Davis, Skripkauskas, Bennett, & Wolf, 2006; Wolf et al., 2007).
Studies on the impact of stigma and health literacy on adherence in other stigmatized illnesses, such as HIV, find that patients with low literacy and those who fear stigmatization are three times less likely to be adherent to their medication than those who have low stigma concerns and low levels of literacy (Rintamaki et al., 2006; Wolf et al., 2007). These factors suggest that patient, provider, and system issues will remain major influences on patient outcomes in the future, and emphasise the relevance of research into factors beyond treatment regimen.
The findings of this study were obtained from patients attending public hospital clinics in Western Sydney so may not be transferable to all patients with CHC, or representative of private patients, or those from other geographic locations. More males than females participated in the interviews, which is representative of the disease epidemiology in Australia (The Kirby Institute, 2012). Data from the interviews are self-reported; and therefore do not allow us to verify the patients' descriptions of clinic activities or the content of the interactions with their healthcare providers. We were unable to recruit patients who had previously discontinued treatment, an important group. Future studies are needed to
compare and contrast patients who discontinued treatment with those who completed it.
Finally, we acknowledge that the clinic setting may be specific to the Australian
healthcare system, although international studies are consistent in their reports that patient, provider and system-related factors such as depression, chaotic lifestyle, side effects, and stigma are determinants of uptake and adherence in patients with Hepatitis C (Mathes, Antoine, & Pieper, 2014; Mravcik et al., 2013), and that location is mediated by socioeconomics such as income (Lemstra, Neudorf, & Opondo, 2006). Thus, we believe that the findings of this study are relevant for healthcare providers internationally.
SUMMARY
In this study, treatment uptake for Hepatitis C was motivated by fear and stigma, but in the context that patients felt they could alleviate the threat of the disease and the shame with the eradication of their disease. Better communication about the realistic threat of Hepatitis C could be a useful tool for patients, provided they are also confident that they have a likelihood of success.
This study also suggests that customising the treatment experience may improve patient adherence and completion rates, in which the patients' individual characteristics and diverse needs are considered in their therapeutic plan. Adopting a patient-centred model that integrates each patient's personal needs and life situation into their treatment program could be the next positive step in increasing adherence and completion rates for patients living with CHC. Additionally, in settings with limited resources, a standardised psychosocial
assessment instrument that identifies patients needing additional support would help to target resources to those most in need.
Despite the increasing availability of interferon-free therapy in the near future, treatment adherence is likely to remain an important issue. Although these regimens will be shorter, with fewer side effects, they may be offered to patients who would not previously have been offered interferon therapy, and treatment may be supervised less closely. Patients failing DAA-based therapy typically acquire drug resistance mutations (Afdhal et al., 2014), which could limit future options for re-treatment. Poor adherence has been identified in research as a problem for more than five decades, indicating that while treatments are improving, human nature is staying the same (Dunbar-Jacob & Mortimer-Stephens, 2001). To quote Dr. C. Everett Koop, "Drugs don't work in patients who don't take them" (Ho, Bryson, & Rumsfeld, 2009, p. 3028).
Therefore, as new treatments become available it will be important to monitor patient adherence and identify groups who may need extra support. In patients with suboptimal adherence,, one approach would be for clinicians to recognise and address psychological and social factors that impact patients' treatment adherence and completion. Ensuring patients have adequate social and emotional support and adaptive coping strategies before treatment initiation, as well as providing practical support, advice, and clinical feedback tailored to individual patient needs, are key to improving health outcomes for patients with Hepatitis C.
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