CORRESPONDENCE

Primary Biliary Cirrhosis: Time to Replace a Misnomer

To the Editor:
At present, the vast majority of patients with the diagnosis pri-
mary biliary cirrhosis (PBC), in fact, are diagnosed at an early stage
of disease and do not suffer from cirrhosis.
1
In addition, approxi-
mately two thirds of patients will never reach the cirrhotic stage of
disease as a result of early serological diagnosis and widespread
treatment with ursodeoxycholic acid. However, once being con-
fronted with this diagnosis term, patients have to deal with the
meaning of the word cirrhosis and its connotations both to them-
selves and their social environmentirrespective of the stage of
their liver disease. According to the results of a psychological study
we conducted in our hospital, this term suggests deadly consequen-
ces to PBC patients and aggravates their perception of being stig-
matized as an alcoholic.
In our qualitative study, 12 consecutively recruited female PBC
patients (mean age: 52 years; range, 21-70) who had been given
the diagnosis recently (5 months, on average; range, 1 day to 2.5
years) were asked, in a semistructured interview, to describe their
own initial mental associations and emotional reactions to the diag-
nosis term PBC, their assumptions of what others associations
might be, and their experiences with actual reactions of their social
surrounding to the term. Interview results were evaluated using a
qualitative content analysis approach.
Shock and anxiety were retrospectively reported as the predomi-
nant immediate emotional reactions by patients when receiving the
diagnosis PBC. Mental associations, such as ultimate destination
and liver collapse, were described as initial thoughts to this diag-
nosis. One patient stated in the interview: First, I could not mem-
orize the words primary biliary, I just heard cirrhosis. And
cirrhosis meant to me, yes, death sentence.
Four patients reported that they expect their social environment
to consider alcohol consumption as their diseases cause when hear-
ing the diagnosis name. Indeed, two thirds of the patients experi-
enced that their acquaintances associated alcohol with the PBC
diagnosis. They had to face comments such as, Only alcoholics
develop liver cirrhosis. Half of the patients described themselves
as affected and stigmatized by others reactions to their diagnosis.
Thus, the use of the term cirrhosis in the diagnosis PBC sug-
gests a fatal disease stage to the patients and their social surround-
ing and promotes their experience as being stigmatized as an
alcoholic. In consequence, this term may further reduce the quality
of life in these patients. Given the fact that, at present, the major-
ity of PBC patients will never reach a cirrhotic stage of disease,
this diagnosis term has become a misnomer, as Rubin et al. called
it already in 1965,
2
and should be replaced.
Thus, we strongly feel that, 50 years after realizing the conse-
quences of this misleading disease term, the time has come for
action within the hepatology community and patient support groups
to replace this misnomer by an adequate name for the disease.
INKA WAHL, PH.D.
1
ANDREAS FEIGE, M.D.
2
BERND LO

WE, M.D.
1
CHRISTINA WEILER-NORMANN, M.D.
3
MATTHIAS ROSE, M.D.
4
ANSGAR W. LOHSE, M.D.
3
CHRISTOPH SCHRAMM, M.D.
3
1
Department of Psychosomatic Medicine and Psychotherapy
University Medical Center Hamburg-Eppendorf and Sch on
Clinic Hamburg Eilbek
Hamburg, Germany
2
Department of Gerontopsychiatry and Psychotherapy
Asklepios Klinik Nord Ochsenzoll
Hamburg, Germany
3
First Department of Medicine
University Medical Center Hamburg-Eppendorf
Hamburg, Germany
4
Medical Department
Division of Psychosomatic Medicine
Charite-Universit atsmedizin Berlin
Berlin, Germany
References
1. European Association for the Study of the Liver. EASL Clinical Practice
Guidelines: management of cholestatic liver diseases. J Hepatol 2009;51:
237-267.
2. Rubin E, Schaffner F, Popper H. Primary biliary cirrhosis. Chronic non-
suppurative destructive cholangitis. Am J Pathol 1965;46:387-407.
Copyright VC
2014 by the American Association for the Study of Liver Diseases.
View this article online at wileyonlinelibrary.com.
DOI 10.1002/hep.27263
Potential conflict of interest: Nothing to report.
This work was supported by the YAEL Foundation.
AQ1
1