- Top of page
- Materials and methods
Chronic hepatitis C viral (HCV) infection is a silent epidemic in the US with almost 4 million Americans estimated to be infected,1 which is four times the prevalence rate of HIV/AIDS.2 HCV-related cirrhosis and hepatocellular carcinoma are expected to double or triple in the next two decades.3 Fortunately, health benefits and risk reduction can be gained by undergoing the current antiviral regimen of pegylated interferon alpha and ribavirin for 24 or 48 weeks, with chances of sustained virological response in 40–80% of treated patients.4 These eradication rates will probably improve in the next few years with the advent of triple therapy.5, 6 Viral clearance of HCV may, in turn, reduce subsequent complications of advanced liver disease.7, 8
Barriers to accessing medical care for HCV have been receiving more attention in the last few years, with the realization that only a small proportion of individuals infected with HCV undergo antiviral treatment.9, 10 However, barriers to hepatitis C medical care are probably quite similar to the barriers which exist among other medically ill populations, especially persons infected with HIV/AIDS.11–13 Barriers to HCV treatment may occur at the patient, provider and healthcare system levels. Patient barriers include the ability to navigate the healthcare system; cost of health services and treatment; lack of insurance and personal financial resources; lack of access to mental health or substance abuse services; social marginalization and stigma; negative experiences with the healthcare system and providers; lack of patient knowledge; occupational concerns; fear of drug or alcohol relapse; and unstable family or social circumstances.13–20 Providers also experience barriers to delivering high quality HCV care, including patient non-adherence to clinic visits; concomitant HIV or other medical comorbidities; lack of adequate training and staffing to treat patients with co-morbid substance use or mental health disorders; and the challenging side effect profile of the antiviral regimen.13–20 Thus, HCV patients may face myriad barriers and challenges to accessing specialized HCV care required to treat this potentially life-threatening disease.
In addition to the aforementioned barriers, another oft-cited barrier to antiviral treatment for patients and providers alike are co-occurring depressive symptoms. One-fourth of patients with HCV meet DSM-IV diagnostic criteria for major depressive disorder, while 45–60% of patients endorse some level (mild-to-severe) of depressive symptomatology.21–26 As depression is often under-recognized and under-diagnosed, the co-morbid depression in many HCV patients may go untreated, and unstable depression is a contraindication to antiviral therapy.19, 27 Depression is associated with poor self-efficacy, will to function, low self-esteem, low self-worth, reduced motivation, reduced adherence, lack of or poor social support, greater perceived stigmatization, pessimism, hopelessness and reluctance to seek healthcare services.28–32 These components of depressed mood are known to disrupt a broad spectrum of health-related, proactive behaviours.32 Depression also reduces access to general medical care because depressed patients often perceive minimal benefits from most medical treatments.28 These cognitive and behavioural correlates of depression may be particularly detrimental to HCV patients if depressed mood is associated with the perception of insurmountable obstacles to accessing speciality care for HCV.
To our knowledge, no study has explored the relationship between patients’ perceptions of barriers to speciality hepatitis care and depressive symptomatology among those infected with HCV. We hypothesized that perceived barriers to speciality care for HCV are prevalent and associated with depressive symptoms among persons living with HCV, over and above relevant sociodemographic factors.
The aims of the present study were as follows:
To determine the most common perceived barriers to speciality care for HCV.
To assess the bivariate relationships between sociodemographic factors, barriers to care, and depressive symptoms.
To determine if depressive symptoms are associated with perceived barriers to care, after controlling for relevant sociodemographic factors.
To evaluate the relationship between barriers to care and depressive symptoms with subsequent clinical outcomes such as commencement and completion of antiviral treatment. (Investigation of subsequent clinical outcomes recommended by journal reviewers.)
- Top of page
- Materials and methods
Very few individuals infected with HCV actually undergo interferon-based treatment, which is potentially curative for 40–80% of patients treated.9, 38, 39 Thus, there is growing need to identify barriers to HCV management and treatment which may be present at the patient, provider, institutional and societal levels. Barrier identification is the first step in devising solutions, such as stimulating the development of models or programmes that can overcome barriers and increase access to potentially life-saving therapy for many infected individuals.
In the present study, patients who were newly referred for a diagnosis of HCV to two hepatology clinics endorsed many perceived barriers to accessing speciality care for HCV. Consistent with other reports, sociodemographic factors such as employment, income level, insurance status and marital status were associated with perceived barriers to HCV care.17, 40 One of the most significant findings from this study was that depressive symptoms, which were prevalent in >25% of this sample, were independently associated with all perceived barriers, over and above the impact of sociodemographic factors. Finally, higher depression scores predicted lower rates of antiviral treatment utilization, and therefore represent a patient level barrier to accessing treatment, even after these patients ostensibly overcame initial barriers to being referred to speciality clinics which treat HCV.
Between 30% and 50% of patients surveyed perceived the following significant problems in accessing specialized care for hepatitis C: lack of personal financial resources, knowledge about HCV in their community, professionals who were competent to provide care for hepatitis C, feeling stigmatized for having HCV and long distances to a clinic that treats HCV. These findings are consistent with previous research with the hepatitis C population, as well as other medically ill populations, including HIV. For example, the cost of health services, lack of insurance, social stigma, and lack of adequate training and staffing to treat HCV patients with co-morbid psychiatric disorders, are all previously described barriers.13, 14, 20
In regression models, depressive symptoms were associated with the perception of multiple barriers, over and above the contribution of sociodemographic characteristics. In other medically ill populations, depression has been related to the perception of extensive barriers to accessing medical care, and to the perception of minimal benefits from medical treatment.28 For the larger HCV community who suffers from depressive symptoms, which may range from 25% to 60%,21, 22 these barriers, whether they be actual or perceived, can be detrimental if patients do not access care early in their disease stage when management and treatment may be most effective. Although we did not assess mediating variables by which depression may exert an effect on perceived barriers to care, it is well-documented that depression is associated with poor self-efficacy, reduced will to function, reduced motivation, greater perceived stigmatization, pessimism, hopelessness and reluctance to seek healthcare services.28–32 These cognitive and behavioural correlates of depression may be considered barriers at the patient level which probably affect the perception and health-promoting behaviours that may be required to access specialized care for hepatitis C. For instance, the motivation, self-efficacy, perseverance and resourcefulness needed to overcome financial, distance and transportation obstacles may be attenuated in HCV patients with co-morbid depression. The pessimism and hopelessness that accompany depression may translate into inaction and passivity about pursuing treatment for their medical condition. Lastly, as patients with both depression and HCV often perceive lower social support and greater social stigma about their conditions,28–31 these beliefs may enhance the perception that there is a lack of providers willing to treat or interested in treating HCV patients. It does not matter whether these barriers are real or imagined; patient perceptions, attitudes and beliefs are often strong predictors of intentions and behaviours.41–43
Results of the post hoc retrospective chart review need to be viewed with caution, and are primarily descriptive in nature, although they offer some preliminary insights into the relationship between demographics, depressive symptoms and barriers to care on time from diagnosis to presentation in clinic, uptake of antiviral therapy, and treatment completion rates. Although it took 61 treatment naïve patients approximately 4 years from the time of HCV diagnosis to attend an initial visit in a speciality HCV clinic, none of the variables investigated (depression, perceived barriers to care, demographics) were significantly associated with this lag time. Lack of bivariate associations could be due to small sample size, data collection time frame and methods, or other reasons not assessed (e.g. patient preference, ongoing alcohol abuse, normal liver enzymes). We also found that patients who subsequently received antiviral therapy in the future were less depressed, and more likely to be married and employed. The notion that mental health issues, such as depression, are significant barriers to treatment is consistent with other reports.44, 45 While there was a trend for the lack of personal and financial resources as a barrier to be negatively associated with receipt of antiviral therapy, it does not appear that perceptions about distance to an HCV clinic, lack of medical/psychological services, or community stigma predict subsequent receipt of antiviral therapy. Perhaps such barriers are most relevant to patients prior to referral to a speciality HCV clinic, wherein, these barriers may cease to exert a significant impact on subsequent clinical outcomes. This speculation would need validation from prospective, observational studies. Finally, 62% of patients completed a full course of the prescribed regimen. Treatment discontinuation was due to protocol-defined termination for viral nonresponse, and adverse side effects, the most problematic of which were neuropsychiatric and gastrointestinal.
Healthcare providers, including primary care and other front-line referring providers, may be able to reduce barriers and increase access to speciality HCV care through altering clinical management strategies. It is important that providers who screen for and diagnose chronic hepatitis C recognize that co-morbid depression is quite prevalent in this patient population and is associated with perceived barriers and receipt of antiviral therapy. Thus, depression should be regularly screened for, and treated if present. Referral to mental health professionals for nonpharmacological or pharmacological treatment, is another viable option, and may actually improve a patient’s chances of becoming eligible for antiviral treatment. Second, it should be recognized that the cognitive (e.g. hopelessness, pessimism) and behavioural (e.g. loss of motivation, social withdrawal) correlates of depression may inhibit the requisite proactive, help-seeking behaviours needed to pursue specialized hepatitis care. Depressed patients may require more direct, concrete assistance (e.g. reminder phone calls, encouragement to attend) to follow through with a referral to a speciality clinic. This strategy may be particularly effective in outpatient settings where HCV is prevalent among patients (e.g. methadone clinics). Feelings of guilt and shame regarding the mode of viral acquisition, self-blame, low self-worth and social stigma are common in depressed HCV patients, and may also feed into the belief that they are undeserving of medical care for HCV. Providing educational materials and encouragement about HCV in the primary care or gastroenterological setting, increasing referrals to clinics that treat a large number of HCV patients, and providing referral for comorbid mental health or substance abuse, may be ways in which healthcare providers can aid in overcoming perceived barriers and increasing access to specialized care for HCV. Finally, as personal and financial resources were cited as the most significant barrier to speciality care, there may be other simple and effective solutions to increase referral and access to medical care for HCV. For instance, public health campaigns can increase awareness among patients and front-line referring providers about clinical trials, which can offset travel and financial burden, as well as industry-sponsored patient assistance programmes, which defray the cost of treatment for individuals from impoverished backgrounds. Using telehealth and web-based strategies to assist healthcare providers practising in rural community settings to screen, manage and treat HCV is another potential vehicle that has demonstrated promise in reducing personal and financial barriers to accessing HCV care.46
There are several limitations of this study. First, inherent to all cross-sectional study designs, we examined associations between variables measured at the same time point, and cannot make inferences about causal order. As such, the relationships between the variables examined in this study may be bi-directional or mediated by a third variable. Second, our sample comprised patients who were already being evaluated in a speciality HCV clinic. Thus, they had already managed to navigate the healthcare system and obtain a referral to a speciality hepatology clinic either by their primary care provider or by a community gastroenterologist. This circumstance may have affected our findings. For instance, it is likely that we are understating the magnitude of barriers facing the larger HCV population; patients with the greatest obstacles to care (e.g. active drug users) were unlikely to be referred to speciality clinics, and therefore were unrepresented in this study. It is likely that the rate of depression and perceived obstacles to accessing care is even higher among the larger HCV population who are not involved in a healthcare system and not represented in this study. Additionally, these barriers may not affect subsequent clinical outcomes once the patient is under the care of a speciality clinic. Third, our study analysed patient perceptions of barriers to care, and perceptions may not reflect actual barriers. Fourth, our analysis of clinical outcomes was based on a post hoc retrospective chart review and small sample size, thus these data are prone to more measurement errors and need to be viewed with caution. Finally, there were some deviations from the assumptions of the linear model that could affect the robustness of the linear regression estimates. However, the same conclusions were attained through sensitivity analyses using logistic regression.
In sum, patients with HCV report several perceived barriers to accessing healthcare specific to HCV at the individual, community and societal levels. Common mood disorders, such as depression, may amplify negative perceptions about the obstacles to obtaining medical care for HCV, although it is likely that some barriers (e.g. lack of personal and financial resources) represent actual barriers to obtaining speciality HCV care and antiviral treatment. As the prevalence of depressive symptoms in this population is high, it is critical that frontline healthcare providers screen, treat, or refer for depression. It is also important to recognize that the cognitive and behavioural correlates of depression may negatively affect patient perceptions and the help-seeking behaviours needed to overcome obstacles in the way of accessing specialized care for HCV.