Page 13 - Time to DeLiver: Getting a Grip on HE report 2015
P. 13
SECTION 2
The stigma of Hepatic Encephalopathy
and Advanced Chronic Liver Disease
• Many patients with advanced chronic liver Feelings of isolation and stigma result in part
from public misunderstanding about hepatic
disease report feeling stigmatised by their encephalopathy and advanced chronic liver
disease. In one survey, 89% indicated disease. In addition, both the public and
they felt stigmatised in at least one aspect some healthcare professionals may make
of their lives.16 judgements based on perceptions and past
experience. This can lead to an unintentional
• Patients with higher levels of perceived barrier preventing patients and their
caregivers accessing healthcare and support
stigma had less social support, were services. In turn, this is one of the underlying
less likely to seek medical care, suffered causes of low rates of diagnosis and effective
higher rates of depression and had a treatment experienced by many patients and
worse quality of life.16 their families. Addressing these barriers will
not only improve individual patient’s lives, but
• Hepatic encephalopathy interferes with also those of their family and caregivers.
patients’ functioning, social interaction Calls to action
and sense of well-being.17 Caregivers
also report effects on their ability to • Healthcare professionals, patient
work, feeling a sense of entrapment and associations and governments need to
suffering poor personal health.18 recognise and address potential barriers
caused by the stigma associated with
• Data from the USA confirm the negative hepatic encephalopathy and advanced
chronic liver disease.
effect of hepatic encephalopathy on
employment and income.18 There is no • Local, national and the European
comparable European data. government should work together to raise
awareness of hepatic encephalopathy and
Isolation and advanced chronic liver disease in order to
stigma add to the define patient-focused initiatives.
impact of hepatic
encephalopathy
on the quality of
life of both the
patient and their
family and/or
caregiver14,17,18
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