The Multidimensional Burden of Hepatitis C and Its Treatment

Abstract

The purpose of this case study was to gain an in-depth understanding of the mental, physical, and emotional burden of being infected with the hepatitis C virus (HCV) from the perspective of an individual living with the disease and undergoing antiviral treatment. Interviews were conducted during and after antiviral therapy with 1 participant chosen from a Midwest HCV clinic population. Interviews were audio recorded, transcribed verbatim, and coded. Content analysis and thematic analysis were performed. The participant reviewed and validated the themes and the interpretation of the themes. Ten categories were identified, which were subsequently integrated in 4 themes: (1) transition or process of change, (2) maintaining control over one's life, (3) social support and communication, and (4) side effects. The results of this study can assist healthcare providers to understand what individuals experience in the course of HCV infection and its treatment. This knowledge will assist them to provide effective patient-centered care. To provide such care, it is imperative that healthcare providers understand the physical, psychological, social, and professional impact that the diagnosis of HCV infection and antiviral therapy has on individuals.

Review of patient-reported outcome measures in chronic hepatitis C

“…Concepts included symptoms and treatment effects related to mental health, physical health, pain, HRQL, activities of daily living (ADL), cognitive dysfunction, and other categories. The most frequently reported CHC-related concepts were: depression [5,6,10,14-30], fatigue [5,6,10,14-26], anxiety/fear [5,6,10,14,17,18,21,22,25,27,28,30,31], musculoskeletal pain/myalgia [6,10,16-18,20,22-24,26], flu-like symptoms [6,10,17,18,23,24,26], irritability [6,16,18,23,29], insomnia or sleep problems [5,6,10,15,18-20,23,24], loss of appetite/anorexia/weight loss [6,10,17,20,23,24], social functioning/isolation/stigma [5,6,10,14-19,22,26-30], gastrointestinal symptoms [5,6,10,17,18,20,24,26], reduced HRQL [5,6,10,14,18,24,32], cognitive impairment [5,10,15,16,20,23,24], and headache [10,18,…”

“…The most commonly reported symptoms were: fatigue [5,6,10,14-26], depression [5,6,10,14-30], anxiety/fear, and inability to function or social consequences of disease [5,6,10,14,17,18,21,22,25,27,28,30]. Other outcomes, including HCV symptoms and side effects of treatment, were: cognitive dysfunction [5,10,15,16,20,23,24], musculoskeletal pain [6,10,16-18,20,22-24,26], gastrointestinal symptoms [5,6,10,17,18,20,24,26], flu-like symptoms [6,10,17,18,23,24,26], dyspnea [18], headache [10,18,20,22,24], reduced functional capacity [6,10,15,18,22,24], reduced quality of life [5,6,10,14,18,24,32], insomnia or sleep problems [5,6,10,15,18-20,23,24], reduced sexual desire [24], loss of appetite, weight loss or anorexia [6,10,17,20,23,24]. …”

“…The most frequently mentioned impact was on social function [5,6,10,14-19,22,26-31], including reduction in social activities, loss of social support, erosion of social roles, and HCV-related stigma. Psychological consequences were discussed along with a range of emotions, including grief [17], guilt [6], frustration [21], shame [6,27], shock [17,22], denial [6,22], despair [27], embarrassment [26], irritability [6,16,18,23,29], and hostility or anger [6,10,15,17,21-23,25,29]. Other emergent themes included difficulty at work [5,6,10,15,18,24,26], uncertainty or a lack of knowledge about the virus [5,6,10,14,15,17,21,22,28,32], issues related to stigma [5,6,14,15,19,22,27,29,30], and discussion of treatment costs and benefits [6,10,14,18,19,21,23,25,26,28,29,32].…”

The lived experience of interferon-free treatments for hepatitis C: A thematic analysis

“…Qualitative investigation into the experience of taking interferon-based treatments has provided valuable insight into this arduous and demanding course of therapy for many years. The findings from this body of work have demonstrated the severity and persistence of a range of both physical and psychological side-effects, including chronic fatigue, flu-like symptoms, myalgia, insomnia, alopecia, weight loss, mood swings, anxiety, and depression (Fraenkel et al, 2006;Hopwood & Treloar, 2005;Kinder, 2009;Sheppard & Hubbert, 2006;Taylor-Young & Hildebrandt, 2009;Zickmund et al, 2006).…”

Physical, Social, and Psychological Consequences of Treatment for Hepatitis C

“…One in-depth US study employed focus group methods with 33 treated patients to elucidate common themes, including the need for broad types of support [17] . Several qualitative and mixed-methods studies with sample sizes ranging from single case reports to about 100 previously treated patients also have explored the medical, social, and employment challenges of HCV treatment in the USA and other nations [18–23] .…”