Introduction
We are a married couple, both pediatricians, who take care of cystic
fibrosis patients in Croatia. In November 2002 we spent 2 weeks at the
CF center in Copenhagen, thanks to a Grant from CFW. We would like to
share with you our experiences and to encourage other professionals
with interest in CF to plan similar educative trips to well
established centers where they can profit and learn.
Background.
Croatia is a rather small European country with about 4.500 000 inhabitants.
Unfortunately, in Croatia, CF often remains unrecognized: there are
about 80 registered patients with this diagnosis, so one can roughly
calculate an incidence of about 1:56 000. This figure is far less than
expected according to the usually reported incidence of CF in Europe.
The structure of our patients is similar to other European CF patients,
most (~70%) are homozygous for ΔF508. There is still no official CF
center in Croatia, but the majority of patients are taken care of at
3 institutions (2 in Zagreb, the capital town of Croatia, and 1 in Rijeka,
see Figure 1). CF in Croatia is almost uniquely the domain of pediatricians,
because the CF Croatian patients didn’t live much longer than
18 years before, and the adults with milder forms of CF were simply
not recognized.
We work in Zagreb, at the University Hospital Center that is attached
to the Zagreb Medical School. This is the largest Medical center with
the largest Pediatric Department in Croatia. About half of the Croatian
CF population is followed at our Department of pediatrics. Our sub-specialties
are respiratory medicine (Dorian) and gastroenterology (Duska), so we
cover the main two systems affected by CF. In our hospital, there is
an outpatient service specialized for CF, where patients meet the pulmonologist,
the gastroenterologist, and the physiotherapist. However, other sub-specialists
come for consultations when needed. Unfortunately, a trained dietician
is not part of our staff, so dietary monitoring and advice on nutritional
issues are given mostly by the gastroenterologist. We try to have regular
check-ups every two to three months. When hospitalization is indicated,
patients are usually admitted to the Division for pediatric pulmonology.
During the past ten years, CF care by our Department has improved because
we implemented some therapeutic and other principles that we learned
about on conferences and through the literature.
We applied for the CFW grant because we wish to upgrade our knowledge
and skills regarding the diagnosis and treatment of patients with CF.
We selected the Copenhagen CF Center because it provides holistic care
for CF patients. Furthermore, Croatia stands now approximately where
Denmark stood about 30 years ago regarding the recognition of CF patients
and the disease as a medical and national problem. So we feel we will
benefit from direct contact with people who have spent the last decades
improving the Danish CF population.
Visit to the Copenhagen CF Center
The CF center is a part of the Rigshospitalet (The Royal Hospital) in
the center of Copenhagen. It is one of the two main CF centers in Denmark.
During our 2 week stay in Denmark we were hosted by Dr. Christian Koch.
Dr. Koch, the head of the Copenhagen CF center, introduced us to all
of his staff, doctors, nurses, technicians, physiotherapists, as well
as administrative staff. We spent most of the time with Dr. Koch and
our vivid memories of Denmark and the CF center are inevitably connected
to Christian’s personality. Unfortunately, this nice man is no
longer among us, but we hope that his spirit inspiring relationships
among colleagues, co-workers and patients is long-lasting. Apart from
pure professional skills, that is also a valuable experience we brought
back home with us.
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Our days at the Center were rather busy. We spent most of the time
observing the routine check-ups of out-patients (children and adults)
and discussing the challenging cases. We participated in rounds of in-patients
as well, and spoke to some of the patients who were willing to share
their problems with us. We learned the way patients were evaluated regarding
serologic and microbiologic testing and on what basis the decision to
treat or not to treat and the choice of antimicrobial drugs was made.
We were surprised by the relatively high rate of allergic reactions
to antimicrobial drugs and saw how this problem was approached, together
with the way the tolerance was re-examined when necessary. We discussed
some problems specific for the adult CF population, such as pregnancy,
working issues etc. These were new topics for us. We were introduced
to the PEP technique for respiratory physiotherapy and we have introduced
this method to our patients in Croatia. We observed the means of assessing
lung function (spirometry, pletismography, exercise tests). We discussed
the problem of lung transplantation, as well as liver transplantation,
not only from the medical point of view (indications, timing, technique...),
but regarding moral, ethical and organizational issues as well. We also
attended regular once-weekly meetings between the clinicians and the
microbiologists where selected patients were presented and discussed
regarding future therapeutic decisions. We had full access to a wide
collection of up-to date literature regarding CF issues and could copy
anything of interest. We also spent time at the microbiological department
lead by professor Niels Hoiby, who showed us some of the research work
going on, like how sputum samples were collected and where they were
processed and what data should be kept. Possible joint research work
was discussed. We were given samples of useful material to take home
with us; i.e. blank check-up lists, blank medical charts, treatment
schemas, protocols for patient evaluation etc.
We were in Denmark almost two years ago. Looking back at our fruitful
stay at the Copenhagen CF center, we feel most of our goals have been
achieved:
Last but not least, we were happy to see that many of the medical (professional)
aspects of patient’s care we provide in Croatia are fully up-to
date, very similar to that in Denmark. Unfortunately, technical support
is lacking and successful and “smooth” patient handling
relies almost entirely on the enthusiastic engagement of the personnel.
Useful suggestions have been given and help has been offered to overcome
some of these problems.
As quite some time has elapsed since our return, some improvements have
already been made, i.e. regarding aspergillosis treatment and keeping
medical records. We are still trying to establish a CF center recognized
by the Government/Ministry of Health within our Hospital center. We
think the ground principals of the “Danish model” for management
of CF patients can be implemented in Croatia, of course with modifications
due to different health policies and socio-economic status.
We are ending this story by pointing out once again the friendliest,
supportive and helping attitude of our hosts, preceded by Dr. Ch. Koch
and Dr. N. Hoiby, as well as all of the staff during our visit. Everyone
made us feel most welcome and we wish to express our gratitude for their
generous assistance.
