Haematologica 2000;85:supplement to no. 10 - Supplements ...

Haematologica 2000; 85(suppl. to n.10)
p. 81-82
Clinical and Organizational Aspects
Related to Immunotolerance Protocols
Immune tolerance: the parent’s perspective
BRIANNA GARGALLO
Rome, Italy
Abstract
A parent whose child affected by hemophilia develops
an inhibitor has to cope with strong emotions
and anxieties related to the acceptance of this second
diagnosis when just having severe hemophilia
seems nothing compared to having antibodies that
neutralize factor infusions and the possibility of
uncontrolled hemorrhages. During the initial stage of
adaptation to this frightening reality, a parent needs
constant support by the Center staff. The period during
which medical personnel and parents decide
about the possibility of putting a child on an immune
tolerance protocol is a crucial one; if parents feel they
have been well informed about this sort of treatment
and feel adequately prepared to handle situations
which may arise, they will take an active role in the
care of their sons and maintain a positive attitude.
The fears and worries are many, the greatest of which
is the constant dread of a negative outcome. The
commitment of staff during the formal period of
instruction, the use of a local anesthetic, play therapy
and the very young age of the child were variables
that made peripheral, home infusion in a 1 1/2 old on
immune tolerance possible. The needs of siblings, of
the parents themselves and the strong bonding
between mother and child are only but a few of the
psychological aspects related to immune tolerance.
©2000, Ferrata Storti Foundation
Immune tolerance induction is most probably
viewed somewhat differently by a parent than
by a nurse or a clinician in that the emotional,
practical and psychological implications
related to this sort of treatment are many. These
so-called subjective side effects of dealing with
inhibitors and immune tolerance can influence
the child’s and the family’s compliance with
regards to the necessary and frequent infusions.
When a parent is given the news that his small
child has developed an inhibitor against a coagulation
factor, he/she may react to this second
diagnosis with feelings of sadness, depression and
anger. A parent realizes perfectly well that
inhibitors are a medical challenge and this, to
them, is very frightening. Giving parents thorough
written information on inhibitors and
immune tolerance at a level they can easily comprehend
is very useful in that they have the necessary
time to learn about this new reality. Not
knowing what may or may not happen to one’s
son now, and in the future, is cause of much
distress for the family; a worried and depressed
parent is not a good example for his children,
whether hemophiliac or not. The particular features
of the antibodies, whether they are high
titer or low titer, must be explained to the parents
as must the way their son’s immune system
reacts to factor challenge: if their son is a
high responder or a low responder.
The decision to start immune tolerance induction
should be preceded by a thorough discussion
regarding risks and short- and long-term
benefits of eliminating the inhibitor. In our case
the decision was taken immediately: to us, the
most obvious treatment for hemophilia was the
total prevention of all bleeding episodes and
this could only be achieved if our son could
once again benefit from factor infusions. We
also had to pave our son’s way towards the
future possibility of gene therapy.
All parents constantly worry about things that
may physically or psychologically harm their
children. Parents of children with hemophilia
and high titer/high responding inhibitors are no
exception. These worries range from the unpredictable
outcome of tolerance to the possibile
Haematologica vol. 85(supplement to n. 10):October 2000