aThe VA North Texas Health Care System Departments of bPsychiatry cSurgery, Division of Emergency Medicine dDepartment of Internal Medicine, Division of Infectious Diseases, The University of Texas Southwestern Medical Center eThe University of Texas Southwestern Medical Center, Graduate School of Biomedical Sciences, Dallas, Texas fThe University of Alabama School of Social Work, Tuscaloosa, Alabama gDepartment of Psychiatry, Washington University School of Medicine, St. Louis, Missouri, USA.
Much of the research to date on barriers to treatment for patients with hepatitis C has approached the problem from either the perspective of the medical provider or the healthcare system.
To better understand these barriers from the patients' perspectives, nine exploratory focus groups of patients with hepatitis C (N=48) were conducted in 2008 and 2009, using a hybrid qualitative analysis.
Eight content categories emerged. Treatment-related issues, including barriers to care, were most emphasized, representing nearly one-half of the entire content. Need for accurate disease-related information was also extensively discussed. Social factors were important, including considerable focus on stigma. Participants described coping abilities including faith and perseverance.
Areas of concern expressed in these focus groups represent underexplored areas that may warrant additional attention or areas for intervention and investigation, such as exploring differences between perceptions of patients and providers regarding the hepatitis C treatment process and addressing barriers to care.
"However, the radical social changes described by our study participants appeared heavily influenced by their fear of stigmatization. In order to protect themselves from negative social consequences, it is common for patients with stigmatized infectious diseases such as HIV and HCV to make careful disclosure decisions and in some cases conceal their conditions as fully as possible [52–54]. Our illness-experienced study group described a range of selective disclosure management strategies that had apparently been effective before the start of their triple therapy. "
[Show abstract][Hide abstract] ABSTRACT: Hepatitis C virus (HCV) infections are a severe burden on public health worldwide, causing mortality rates triple that of the general population. Since 2011, for both therapy-naive and therapy-experienced genotype 1 patients, the first generation of direct acting antivirals (DAAs), i.e., the protease-inhibitors (PI) telaprevir and boceprevir have been added to existing dual therapies. The therapeutic effect of the resulting triple therapy is striking; however, treatment regimens are complex and commonly cause side effects. Little is known of how patients implement therapy in their daily lives, or of how they deal with these effects.
This study aims to describe HCV patients' experiences with protease-inhibitor-based triple therapy and their support needs.
A qualitative design was used. Patients from three outpatient clinics, with ongoing, completed or discontinued PI treatment experience were recruited using a maximum variation sampling approach. Open-ended interviews were conducted and analyzed using thematic analysis according to Braun & Clarke (Qual Res Psychol 3:77-101, 2006).
Thirteen patients participated in the interviews. All described themselves as highly motivated to undergo treatment, since they saw the new therapy as a “real chance” for a cure. However, all later described the therapy period as a struggle. The constitutive theme–“Fighting an uphill battle”– describes the common existential experience of and negative consequences of coping with side effects. The processes that fostered this common experience followed three sub-themes: “encountering surprises”, “dealing with disruption” and “reaching the limits of systems”.
HCV patients undergoing outpatient protease-inhibitor-based triple therapy need systematic support in symptom management. This will require specially trained professionals to advise and support them and their families, and to provide rapid responses to their needs throughout this complex course of therapy. As the generation of DAAs for all genotypes, are expected to have less severe side effects, and many HCV patients require treatment, this knowledge can improve treatment support tremendously, especially for patients who are quite difficult to treat. Furthermore, these findings are helpful to illustrate development in HCV treatment.
[Show abstract][Hide abstract] ABSTRACT: 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.
Psychology and Health 01/2015; 30(8):1-32. DOI:10.1080/08870446.2015.1012195 · 2.13 Impact Factor
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