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HIV & Hepatitis C: Coping with Coinfection (Part 2)
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Part 1 of this series (presented in the Spring 2010 issue of mental health AIDS) provided a medical, psychiatric, psychosocial, and neuropsychological overview of HIV/hepatitis C virus (HCV) coinfection, the process of determining eligibility for HCV treatment, and the important role mental health clinicians play in assessing eligibility and intervening with clients who elect to receive treatment for HCV.
This concluding segment expands on how providers make the decision to offer HCV treatment to individuals living with HIV and chronic HCV infection, how coinfected individuals make decisions to accept or defer treatment for HCV, and the latest thinking on HCV treatment interventions.
What Providers Say
Wagner et al. (2009) documented "findings from semistructured, qualitative interviews conducted with 11 HCV primary care providers and 11 support staff at 3 HIV clinics in Los Angeles, California. The goals of the study were to explore the factors and processes by which providers make HCV treatment decisions, and the barriers to HCV treatment uptake, among HCV treatment-naïve HIV patients with chronic HCV infection" (p. 716). Among these three clinics,
rates of HCV treatment uptake varied from 10% to 38%. Providers agreed that stable HIV disease, favorable genotype, and significant signs of liver disease progression are all signs of need for treatment. However, two divergent treatment approaches emerged for genotype[-]1 and [-]4 patients with minimal disease, and in definitions of patient readiness. Providers with lower treatment rates preferred to delay treatment in hopes of better future treatment options, and were more conservative in requiring complete mental health screens and treatment and abstinence from substance use. Conversely, providers with higher treatment rates viewed all patients as needing treatment as soon as possible, and defined readiness more leniently, with some willing to treat even in the context of untreated depression and drug use, so long as ability to adhere well was demonstrated. (p. 715)
Wagner and colleagues' findings thus highlight
two approaches to managing HCV treatment decisions. One views treatment initiation as more urgent and is willing to accept the risk of a more lenient definition of patient readiness for treatment. The other takes a more cautious approach with a preference for holding off treatment until it is clear that a patient's liver disease is in need of treatment and the patient has all the signs of being ready to adhere well. There is no clear evidence indicating whether one approach is more appropriate than the other. An urgent approach to treatment results in more patients being treated and thus more patients being "cured," but also more patients who endure significant side effects that compromise mental health and quality of life without virologic benefit.
Conversely, delaying [HCV] treatment can reduce unnecessary burden on a patient's quality of life, and better, less toxic treatment may become available before the patient's disease progresses to the point of definitively needing treatment; however, ultimately treatment is needed to avoid liver failure and the longer a patient waits, the lower the odds of treatment being successful with the currently available treatment. Regardless of which approach may be more appropriate, development of effective programs for promoting patient readiness for treatment are critical to ensuring that more patients receive treatment, either earlier in the disease or later, given the high mortality associated with liver disease among HIV/HCV coinfected patients. (p. 723)
Of course, "provider decisions to recommend or offer treatment [are] critical to providing treatment access, but whether or not a patient starts treatment is ultimately in the hands of the patient" (Wagner et al., 2009, p. 723), "and 15%-30% of coinfected patients decline treatment. . . . Clearly, many patients perceive the risks of treatment to outweigh its benefits, though few studies have examined specifically how coinfected patients make HCV treatment decisions" (Osilla et al., 2009, p. 993). On this point, two recent studies examined how coinfected individuals make decisions regarding treatment for HCV.
What Their Patients Say
This same Los Angeles-based research team (Osilla et al., 2009) conducted semistructured interviews with 35 HIV/HCV coinfected patients at the same three HIV clinics and also drew data from their interviews with the 11 primary care providers included in the study by Wagner et al. (2009), for the purpose of exploring factors that influence the decision to initiate HCV treatment. The investigators interviewed "patients who had been offered treatment (n = 26) as well as those who had not (n = 9), and among patients who had been offered treatment, those who had started treatment (n = 17) as well as those who declined treatment (n = 9). The site coordinator at each clinic (a clinic staff member) identified a convenience sample of coinfected patients who represented these various treatment decision points and informed the patient[s] of the study to assess their interest in participating" (p. 994). Among these 35 patients,
31 (89%) were male, mean age was 49.8 years (standard deviation [SD] = 8.1), and 22 (63%) were non-Caucasian (12 Hispanic, 9 African American, 1 Asian). Patients reported being diagnosed with HIV between 1986 and 2005. All but two were currently on HIV antiretroviral therapy, and the mean self-reported CD4 count was 470 (SD = 250; range: 93-1000). Timing of HCV diagnosis ranged from 2 to 18 years prior to the interview. The majority (27/35; 77%) had a history of alcohol or drug problems, with the latter including use of marijuana, cocaine, methamphetamine, and heroin. Over half (56%) reported past injection drug use. In terms of current substance use, 27% reported some alcohol use and 19% reported drug use (mostly marijuana). (p. 995)
Additionally, the investigators conducted semistructured interviews with 11 primary care providers who were "the primary decision makers with regard to whether or not HCV treatment was recommended to patients. As part of these interviews, providers were asked about how their relationships with patients influenced the patient's decision to accept or refuse HCV treatment" (p. 994).
Among the 26 patients who were offered treatment, "fear of treatment side effects and being uncertain of one's emotional stability and drug use were all concerns to patients who chose to refuse treatment" (p. 997). On the other hand,
factors related to wanting to start treatment ranged from not wanting to waste time and the hope of being cured and being healthy, to feeling like there was nothing to lose by going on treatment, and a sense of trust and faith that their doctor would help them be successful with treatment. The most common factors across both groups of patients were perceived need to preserve physical health and survival, trust in the quality of relationship with one's provider, level of support for treatment within one's social network, and self-perception of treatment readiness. (p. 995)
Osilla and colleagues expand on these factors as follows:
Need for treatment to preserve physical health and survival. The most common reason patients reported for deciding to start treatment was concern over the effects of HCV disease on their physical health and related motivation to live and remain healthy, which was reported by 8 of the 17 patients (47%) who started treatment. . . . (p. 995)
Treatment readiness. One factor that strongly influenced decisions to start treatment as well as to defer treatment was a sense of personal readiness for treatment. How patients viewed or defined their readiness for treatment varied considerably. For some patients, feeling that their HIV disease was under control and stable implied a readiness to then take on HCV disease. . . . Others spoke of treatment readiness with regard to feeling ready to tolerate side effects, and being medically and psychologically stable. . . . Seven of the 17 (41%) patients who decided to start treatment expressed a confidence in being able to handle treatment side effects compared to only one of nine (11%) patients who refused treatment. . . . For many patients, treatment readiness was viewed in reference to a sense of stability in one's life Ð from feeling stable mentally and emotionally, to having substance use under control, and having a roof over one's head and being able to support oneself. Patients understood that treatment was going to be stressful and therefore they felt the need for more stability in their lives before starting treatment. . . . (pp. 995-996)
Social support. While most patients expressed intrinsic reasons for wanting to start or defer treatment, several patients also referred to the influence of people in their social network.
Six of 17 patients (35%) who decided to start treatment stated that the HCV support group they attended was influential in their decision; HCV support groups were not mentioned at all by those who refused treatment, although it is not known whether these patients were members of such groups. Patients reported consulting with fellow patients about their experiences with treatment, including how they dealt with side effects and whether they viewed treatment as "worth it." Being able to address their fear of side effects with a patient actually in treatment or who had recently completed treatment helped dispel misunderstandings about the treatment. . . . (p. 996)
Doctor-patient relationship. When asked about the influence of the relationship with their doctor, 11 of the 17 (65%) patients who decided to start treatment reported that having a supportive doctor contributed to their decision compared to 2 of the 9 (22%) patients who refused treatment. While all patients in the study spoke favorably of their providers, it was the patients who decided to start treatment who often made especially strong statements about the quality of relationship they had with their doctor. . . . When discussing how their doctors were supportive, patients referred to how their providers were responsive, dependable, and provided hope and encouragement regarding benefits that could be derived from treatment. (p. 996)
Given the strong influence that HIV primary care providers appear to have with regard to HCV treatment decisions made by their patients, Osilla and colleagues surmise that the way in which providers
present treatment recommendations may play a key role in the patient's response.
. . . [Approaches] can vary from one that reflects strong advocacy and encouragement of treatment, to one that is more neutral and [a] mere presentation of options, to a presentation that may subtly dissuade a patient from considering treatment. In many cases, the provider's general philosophy and sense of urgency toward treatment was reflected in [his or her] approach to presenting treatment as an option for the patient.
. . . [Among the] strategies some providers use to encourage and motivate patients to accept the [recommendation for HCV] treatment . . . [are] emphasizing the importance of treatment for the patient's health, the chance for treatment resulting in a cure, and confidence that the provider can effectively address any side effects that the patient may experience. . . . Other providers described a more neutral stance in presenting treatment as an option to the patient. These providers described an approach in which they lay out the potential benefits and costs of treatment, so that the patient can make an informed decision. Providers may be more likely to use this approach when they themselves feel ambivalent or unsure of the importance of treatment for the patient. . . . There are also providers who took a more cautious view of treatment. These providers viewed treatment as urgent for some patients with advanced disease, but for many patients with less progressed disease they believed it was best to defer treatment and wait for better treatment to become available, and this preference can be detected in how they offer treatment to the patient. (pp. 996-997)
Osilla and colleagues conclude that
the patients in this study confirmed what had been reported by their providers, that stability of HIV disease, perceived need for HCV treatment, and treatment readiness with regard to motivation, preparedness to deal with side effects, absence of substance abuse, and stability of mental health and overall life circumstances are key factors influencing treatment decision-making. Providers play a critical role in the treatment decisions of their patients, not only by providing information and being trustworthy experts, but also through their partnership with the patient and the sequential interactions whereby both the patient and provider may influence the other's evaluation of the patient's readiness for treatment. Providers serve as key catalysts for evaluating treatment readiness, but also helping patients to address issues that impede readiness, whether through referrals, counseling, or simply ongoing support that fosters the patient's trust. (p. 998)
What Other Patients Say
Similar to Osilla and colleagues, Bova, Ogawa, and Sullivan-Bolyai (2010) set out "to describe the experiences of HIV-infected patients as they made decisions to begin or defer HCV treatment and to develop a model to guide the development of future interventions to support HCV treatment efforts in coinfected patients" (p. 65). "The study sample included 39 HIV/HCVcoinfected adults, 54% male, 51% minority, 36% without a high school diploma or GED (high school graduation equivalent), 87% with a history of mental illness, 95% with a history of substance abuse, and 59% with HCV subtype 1. The mean age of the study sample was 45.1 years (range, 34-56), and 36% had AIDS" (p. 66). Among these study participants, there were "16 in the HCV-treated cohort (who were interviewed a maximum of 3 times) and 23 in the HCV-nontreatment cohort" (p. 63).
"Analysis of qualitative data from the entire sample resulted in six major themes. These themes were further categorized into treatment barriers or treatment-facilitating factors. The two treatment barriers were (a) treatment fears (associated with side effects, liver biopsy, substance abuse relapse, and needle use) and (b) vicarious experiences. The four facilitating factors were (a) experience with illness management, (b) patient-provider relationships, (c) gaining sober time, and (d) facing treatment head-on" (pp. 66, 68). Bova and colleagues elaborate on these themes, all of which are "amenable to behavioral intervention" (p. 72), as follows:
Fears. The major concern discussed by most participants (n = 32, 82%) was fear of side effects of HCV treatment. . . . Fear of the liver biopsy was specifically mentioned by 14 (36%) participants. . . . It is also important to note that 7 participants (18%) had no major problems with the liver biopsy. . . . Many participants were aware of the potential risk of HCV treatment to their sobriety. . . . A total of 7 participants expressed concerns about the need to use needles to administer the interferon component of the HCV treatment regimen. Some were concerned about the "feeling of self-injecting," whereas others were more worried about having needles around the house. . . . (pp. 68-69)
Vicarious experiences. Many participants (n = 11) discussed seeing others going through HCV treatment or hearing the stories of others who had been treated. They said they formed their opinions about beginning treatment based on these vicarious experiences. . . . (p. 69)
Experience with illness management. Study participants (n = 7) discussed their experiences managing HIV and many other illnesses (including cancer, heart disease, diabetes, and asthma). They discussed using strategies developed over time to manage these chronic conditions as a way to manage HCV and subsequent treatment. . . . (pp. 69-70)
Patient-provider relationships. Participants also spoke about the importance of patient-provider relationships as a means to help them get through HCV treatment. They discussed the positive aspects of their relationships with various health care providers and how these relationships were integral to evaluation and treatment acceptance. . . . (p. 70)
Gaining sober time. An important concern mentioned by 6 study participants was gaining sober time. In addition, many participants discussed the role of substance use in making their treatment decisions. Participants agreed that a certain amount of sober time was needed before starting HCV treatment; the sober time mentioned ranged from 6 months to 2 years. . . . (p. 70)
Facing treatment head-on. The last theme involved facing treatment head-on. Participants described how they reframed all the negative issues associated with HCV treatment and established a mind-set that helped them move forward. (p. 70)
In discussing these findings, Bova and colleagues observe the irony that
HIV-infected patients are dying from liver-related complications while having an undetectable HIV viral load. This knowledge creates a tremendous need to reduce the risk imposed by liver disease in HIV-infected patients. . . . Results of this study highlight three important issues. First, patients who accept HCV treatment differ in some way from those who refuse or defer treatment. Patients who begin treatment do reasonably well when significant supports are put in place. They tend to use strategies that help them prepare and begin treatment on the basis of earlier illness experiences. The authors' data are consistent with other reports that state that preexisting psychiatric illness was not a major barrier to HCV treatment. . . . Effective preevaluation and support strategies were in place that helped facilitate HCV treatment.
In contrast, those who do not begin treatment tend to be fearful and use other patients' negative experiences as a reason to hold off on HCV treatment. (p. 71)
From Theory to Practice
Bova and colleagues (2010) believe that these findings
shed light on possible theoretical orientations that might be useful for developing HCV-treatment interventions. For example, the result that participants used vicarious experiences to make decisions about moving forward with HCV treatment implies that Bandura's social learning theory (Bandura, 1986) might be useful for intervention development. Bandura . . . indicated that different types of information could influence a person's self-efficacy to perform certain behaviors (e.g., deciding to be treated for HCV infection). Vicarious experience is a form of learning that occurs when patients watch those similar to themselves take part in a certain behavior or activity. If HIV-infected patients have the opportunity to watch others master HCV treatment, they may be more likely to decide to move forward with HCV treatment. Likewise, an appraisal-centered theoretical orientation may be useful for intervention development. The cognitive appraisal model, for example . . . (Lazarus & Folkman, 1984)[,] focuses on the appraisal or meaning of an event (i.e., HCV infection) to one's personal well-being. An intervention that helps patients reframe the negative meaning associated with HCV treatment may be useful for helping them make HCV treatment decisions. Other models that focus on the evaluation of perceived risks and benefits (e.g., health belief model, self-regulation) may also be useful for guiding HCV intervention development. (pp. 71-72)
To conclude their discussion, Bova and colleagues reference an ethical consideration about treatment for patients living with HCV in a letter written by Rifai (2006), who "suggested that for patients to make a truly informed treatment decision, primary care providers, specialty care providers (e.g., hepatology, psychiatry), patients, and their families need to engage in a dynamic dialogue. . . . The authors concur and believe that interventions with the best chance of success in helping coinfected patients make this complicated treatment decision will be theoretically based, intense enough, and will include interprofessional involvement" (p. 72).
----Compiled by Abraham Feingold, Psy.D.
References
Bandura, A. (1986). Social foundations of thought and action: A social cognitive theory. Englewood Cliffs, NJ: Prentice-Hall.
Bova, C., Ogawa, L.F., & Sullivan-Bolyai, S. (2010). Hepatitis C treatment experiences and decision making among patients living with HIV infection. Journal of the Association of Nurses in AIDS Care, 21(1), 63-74.
Lazarus, R.S., & Folkman, S. (1984). Stress, appraisal and coping. New York: Springer.
Osilla, K.C., Ryan, G., Bhatti, L., Goetz, M., Witt, M., & Wagner, G. (2009). Factors that influence an HIV coinfected patient's decision to start hepatitis C treatment. AIDS Patient Care & STDs, 23(12), 993-999.
Rifai, M.A. (2006). Ethical impasses in the care of patients with hepatitis C [Letter]. Psychosomatics, 47(6), 540-541.
Wagner, G., Ryan, G., Osilla, K.C., Bhatti, L., Goetz, M., & Witt, M. (2009). Treat early or wait and monitor? A qualitative analysis of provider hepatitis C virus treatment decision-making in the context of HIV coinfection. AIDS Patient Care & STDs, 23(9), 715-725.
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