Hepatitis C (HCV) constitutes a major health threat to veterans. Screening has been broadly implemented, effective treatments are available, and promising improvements in treatment have been introduced in the past year. However, treatment is prolonged, costly, and burdensome on patients. Side effects are often severe and diminish quality of life. Treatment noncompletion is common. Patients' capabilities for completing treatment and the factors that cause them to withdraw have been poorly understood.
We designed a mixed method, but largely qualitative study of patients' experiences of treatment, comparing the perceptions of patients who complete treatment with those who do not, in order to explain completion. We had three specific aims:
1. identify attributes of information, motivation, behavior, social relationships, and interactions with clinicians that patients associate with antiviral treatment for hepatitis C
2. describe qualitative differences between patients' accounts of completing or withdrawing from antiviral treatment, with respect to information, motivation, behavior, social relationships, and interactions with clinicians
3. using structured instruments developed in accomplishing aim 2, evaluate quantitatively associations between measures of patients' information, motivation, behavioral skills, social relationships, and interaction with clinicians and their completion or withdrawal from antiviral treatment
The project was conducted in two phases. Phase 1: we conducted qualitative interviews with three groups of patients at each of four VAMCs. Retrospective interviews were conducted with patients who (1) completed antiviral treatment or (2) withdrew prematurely in the preceding 12 months, and repeated, prospective interviews were conducted with (3) about to initiate treatment, with follow-up interviews at weeks 4, 20 and 32-40, or until treatment was stopped. We interviewed clinicians at the 4 HCV clinics and people the patients identified as supporting their efforts to complete treatment. Analysis of these data was guided by grounded theory and narrative analysis methods, beginning with comparisons between patients who completed and those who did not, and between patients and others (clinicians and supporters). Results of the qualitative analysis informed the design of instruments for phase 2. Phase 2: we surveyed patients currently undergoing antiviral treatment, in order to produce quantitative assessments of attributes of behavioral factors that would account for treatment completion.
We interviewed 100 patients in Phase 1: 60 who completed (23) or did not complete (37) (retrospective) and 40 who were followed prospectively. Patients who did not complete treatment were subdivided for analysis into three groups: treatment stopped by clinician (1) due to lack of early viral response (6/37 retrospective, 3/40 prospective) or (2) toxicity (15/37 retro, 9/40 prospective), and (3) patient withdrawal (16/37 retro, 6/40 prospective). We interviewed 14 clinicians and 14 supportive others.
Patients' accounts depicted three domains: (1) themselves as actors engaged in treatment, (2) the antiviral regimen and its rationale, and (3) their life circumstances. Attributes of the actor included identity (e.g., prior identity with a lifestyle that involved risk for HCV), motivations for treatment, adapting to treatment, and their bodily and mental experiences, including side effects. Attributes of the regimen and its rationale included knowledge of the disease, preparing for treatment, and regimen management. Life circumstances included interactions with clinicians and others, residential situations, and work environments.
Patients' reasons for undertaking treatment ranged from curing HCV, mentioned infrequently, to far-reaching personal pursuits to restore health and dignity. Disease control was cast as urgent efforts to a change a personal and disease trajectory leading to the bad end of liver failure. Urgency could arise after long deferring treatment; the time to take unpleasant action had arrived. Some cited a significant social reconnection, e.g., a family member or a newly trusted provider, or started after securing circumstances conducive to coping with the debilitating effects of treatment. Treatment was a moral pursuit for many: a step in a personal project of rehabilitation and even redemption, from a life that involved drug or alcohol abuse, to be achieved through an effort to eradicate a stigmatizing virus, even if the effort was unsuccessful.
Virtually every patient considered stopping at one point, but only 21 of 100 patients actually withdrew. Withdrawal was explained in five ways. (1) Relief of side effects that erased motivations to continue or raised fears that the treatment threatened their health. (2) Demoralization from the side effects and the regimen, especially when dealing with multiple comorbidities. (3) Perceptions of early viral response as obviating the need for continued treatment-a clinical sign that treatment was working taken as indicating that treatment could be stopped. (4) Emergent, competing work or rehabilitation commitments, or other obligations. (5) Changes in residential or other circumstances that no longer enabled treatment.
Side effects were imbued with psychosocial meanings, making sense they hindered activities and relationships or caused demoralization, or as they were also cast positively as objects of struggle-the foci of efforts to persevere. Those who withdrew described the side effects as more than they could bear. Completers described emotional coping strategies, e.g., inner dialogues encouraging perseverance in spite of fatigue and depression. Completers maintained social participation, while those who withdrew from treatment reported social withdrawal.
Work, including rehabilitative placements, was both the setting in which side-effects became problematic and the sites of helpful structure and support. Persevering with treatment entailed balancing work and treatment with flexible work schedules, accommodating employers, and helpful coworkers. Conversely, patients who withdrew from treatment cited difficult bosses and problems managing the demands of jobs.
Relationships with nurses and physician assistants were critical, with respect to five attributes: candor, communication, preparation, emotional support, and relationship quality. Completers described candor about side effects, personal concerns, and struggles to persevere. Some non-completers withheld complaints of fatigue so as to appear motivated, hindering timely management of anemia. Completers depicted nurses who were attentive to their concerns; noncompleters lapses in communication. Completers said nurses prepared them and supported their efforts to achieve candidacy for treatment, such as maintaining sobriety; non-completers recalled feeling pressured to undertake treatment. Completers uniquely described collaborative problem solving in dealing with emergent challenges and side effects.
Findings from this project have been shared with colleagues in the HIV/HCV QUERI and operational partners in the Public Health Strategic Health Care Group. While it is early to determine impacts on clinical care and public health policy in the VHA, the findings have had impact in the design of additional studies of HCV caregivers, shared treatment decision making, and adherence to direct-acting antiviral regimens
External Links for this Project
- Gifford AL, Drainoni M, Koppelman E, Clark JA. Patient narratives of their experiences and motivations going through hepatitis C (HCV) drug treatment. Poster session presented at: Society of General Internal Medicine Annual Meeting; 2011 May 4; Phoenix, AZ. [view]
- Fix GM, Bolton RE, Drainoni M, Koppelman E, Gifford AL, Clark JA. The impact of work on patients’ abilities to complete hepatitis C treatment. Paper presented at: VA HSR&D / QUERI National Meeting; 2012 Jul 18; National Harbor, MD. [view]