Quality of Life Impact from Hep C: In America Survey Findings
Quality of life can be greatly impacted for people living with the hepatitis C virus. Dealing with symptoms from hepatitis C can take an effect on an individual’s well-being, relationships and work life.
Findings from our 2015 Hepatitis C In America Survey
Besides managing symptoms and treatment options, Hepatitis C patients are often faced with managing the disease’s impact on their lives and emotions. Over half of hepatitis C patients surveyed fear they will die from hepatitis C (56%). Along with distressing over the future outcome, individuals are embarrassed or ashamed about having hepatitis C (42%). A total of 27% feel that others treat them differently when they learn of their diagnosis, most likely why about 1 in 4 patients are afraid to tell others of their diagnosis.
These insights were gathered from 403 individuals who tested positive for HCV and have been diagnosed with hepatitis C during Health Union’s Hepatitis C in America 2015 survey. The study not only asked individuals about their symptoms and diagnosis journey, it also examined treatment experience and quality of life.
Many of those surveyed indicated that hepatitis C prompted them to have feelings of anger, isolation, fear and fatigue. More than a third of individuals surveyed have stopped doing things they used to enjoy due to their hepatitis C (36%) and 44% blame themselves for contracting the disease.
Quality of life impacts from hep C: Mental health. and wellbeing
Countless individuals indicated that they wished others knew more about the disease, particularly its impact on patients’ physical and mental health, as well as how it is transmitted. This desire came from patients not wanting others to be infected themselves, as well as to not fear the interaction with the patient. More than a third of individuals surveyed constantly worry about infecting others with hepatitis C (36%), and 22% cite that others are afraid they will be infected by the individual.
When asked to describe hepatitis C in less than 50 characters, individuals were apt to illustrate the emotional impact of the condition. Words such as devastating, scary, and awful were frequently used.
With such impact on their quality of life and emotions, it’s surprising that most changes made since diagnosis have revolved around symptom management and regularly engaging with their doctor or healthcare professional, very few have reported joining a support group since being diagnosed (9%). However, 41% were seeking more information about depression and hepatitis C.
Fortunately, for over half of the individuals surveyed, hepatitis C had no impact on their relationships with others, such as spouses, children, friends and colleagues. Of those relationships in which hepatitis C had the greatest impact, it was with a partner or spouse. Hepatitis C was reported as contributing to only 7% of divorce / separations among those surveyed, and 18% have avoided sexual contact with their spouse of partner due to the disease. Very few feel alienated by their family and friends because of hepatitis C (8%) and only 10% have lost friends due to the disease.
Of the individuals surveyed, over a third were on disability and a 1/3 worked full or part-time. 14% reported losing a job and 20% have had their career advancement impacted due to hepatitis C. Of those individuals that worked, 39% cited that hepatitis C impacted their ability to work. Fatigue was the most prevalent impact (92%), followed by difficulty in concentrating and completing work (68%). Being irritable and feeling moody at work impacted 53%, as well as depression at work being an issue for 19%. Aside from the mental and cognitive impact, 57% reported that their physical symptoms affected their work ability.
The effects of hepatitis C can be visible on an individual’s emotional and physical well-being. How is your quality of life impacted by hepatitis C? Share in the comments below!
Have you taken our In America Survey yet?