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Maja Strozzi*1,2
1 Medicinski fakultet
Sveučilišta u Zagrebu,
Klinički bolnički centar
Zagreb, Zagreb, Hrvatska
2 Radna skupina za prirođene
bolesti srca u odraslih,
Hrvatsko kardiološko
društvo, Hrvatska
1 University of Zagreb School
of Medicine, University
Hospital Centre Zagreb,
Zagreb, Croatia
2 Working Group on Adult
Congenital Heart Disease,
Croatian Cardiac Society,
Croatia
CITATION: Cardiol Croat. 2016;11(1-2):3–4. | DOI: http://dx.doi.org/10.15836/ccar2016.3
*ADDRESS FOR CORRESPONDENCE: Maja Strozzi, Klinički bolnički centar Zagreb, Kišpatićeva 12,
HR-10000 Zagreb, Croatia. / Phone: +385-1-2367-508 / E-mail: maja.strozzi@gmail.com
ORCID: Maja Strozzi, http://orcid.org/0000-0003-4596-8261
Uvodnik Editorial
S
velikim sam zadovoljstvom prihvatila biti
gost urednik ovoga broja časopisa
Cardio-
logia Croatica
. Broj je posvećen prirođenim
srčanim bolestima odraslih. Već je nekoliko puta
u ovom časopisu bilo riječi o toj temi sa stajališta
epidemiologije i organizacije1,2, a u ovom bih se
uvodniku osvrnula na neke druge teme te upo-
znala hrvatsku kardiološku javnost s određenim
napretkom koji smo postigli u kratkom vremenu
u kojemu je problem odraslih bolesni ka s prirođe-
nim bolestima srca u Hrvatskoj osviješten.
Akronim
. U svrhu lakšeg razumijevanja, u li-
teraturi koja je uglavnom engleska, pojavljuju
se dva akronima za kongenitalne srčane bolesti
odraslih, a to su GUCH (
grown up congenital he-
art disease
), više rabljen u Sjedinjenim Država-
ma, i ACHD (
adult congenital heart disease
), koji
prevladava u Engleskoj, odnosno Europskoj uni-
ji. Razmišljajući koji bi akronim bio prihvatljiv u
hrvatskom jeziku, pri osnivanju Radne skupine
za prirođene srčane bolesti Hrvatskoga kardi-
ološkog društva, na sjednici Upravnog odbora,
raspravljali smo o toj temi i suglasili se s prijedlo-
gom PSBO (prirođene srčane bolesti odraslih). O
tom prijedlogu očekujemo širu raspravu te će to
biti i tema okruglog stola na našemu sljedećem
nacionalnom kongresu. Radi jednostavnije ko-
munikacije u ovom ćemo broju rabiti taj akronim.
Referalni centar
. S obzirom na preporuke, kako
smjernica3, tako i općeg konsenzusa stručnjaka
iz tog područja, ovom prilikom upoznali bismo
čitatelje s činjenicom pokretanja postupka osni-
vanja nacionalnog centra za zbrinjavanje bole-
snika s PSBO-om u Kliničkom bolničkom centru
Zagreb zato što ta ustanova za sada jedina ima
sve elemente potrebne za multidisciplinarni pri-
stup takvim bolesnicima. Prema broju stanovni-
ka, Hrvatska ih može očekivati 5 – 10 tisuća te
It was a great pleasure to accept the invita-
tion to be the guest editor for this issue of
Cardiologia Croatica
, which is dedicated to
congenital heart disease in adults. This topic
has been touched upon several times already
in the journal from the organizational and epi-
demiological perspectives1,2. In this editorial, I
would like to address other topics and inform
the general cardiologic public in Croatia about
some progress achieved over a short span of
time in increasing awareness of the problem of
adult patients with congenital heart disease.
Acronym
. For easier comprehension, two ac-
ronyms are generally used in the predominantly
English language literature: GUCH (grown-up
congenital heart disease), more common in the
USA, and ACHD (adult congenital heart disease),
more common in the UK and European Union.
While deliberating on the best acronym to use
in the Croatian language during the formation of
the Working Group for Congenital Heart Disease
of the Croatian Cardiac Society, we discussed this
topic at the meeting of the Management Board
and agreed on the acronym PSBO (“prirođene
srčane bolesti odraslih” – congenital heart dis-
ease in adults). We expect more discussion on
this topic and that this will be one of the points
addressed at the round-table meeting at our next
national congress. For easier comprehension, the
Croatian language version of this Journal’s issue
will be using PSBO as an acronym.
Referral Center
. Given the recommendations in
relevant guidelines3 as well as from the general
consensus of experts in this eld, we would like
to announce the beginning of efforts to found a
national care center for patients with ACHD at the
University Hospital Centre Zagreb, since this in-
stitution is currently the only one with all the ele-
Prirođene srčane bolesti odraslih
Adult Congenital Heart Disease
Cardiologia Croatica
2016;11(1-2):3.
RECEIVED:
January 5, 2016
ACCEPTED:
January 31, 2016
Cardiologia Croatica
2016;11(1-2):4.
će imati potrebe za jednim do dva takva centra. U kratkome
članku u ovom broju opisana su glavna obilježja ovakvog cen-
tra, a posebno treba naglasiti da bi se svi bolesnici s PSBO-om
trebali registrirati u njemu, obaviti prvu evaluaciju, a da će se
većina nastaviti liječiti u loka lnim ustanovama, osi m u sluča-
ju iznimne kompleksnosti ili iznimnih situacija.
Registar
. Veoma je važno i osnivanje registra. I iz drugih
područja kardiologije znamo koliko nam nedostaju nacional-
ni podatci, i ne jednom smo o tome raspravljali (registar akut-
noga koronarnog sindroma, registar perkutanih koronarnih
intervencija i sl.). S obzirom na relativno ograničen broj bo-
lesnika s PSBO-om, pruža nam se jedinstvena prilika da prvi
put u Hrvatskoj imamo pravi registar, a u ovoj kategoriji on
je veoma važan, jer je riječ o tzv. cjeloživotnim pacijenatima,
koji se međusobno razlikuju unatoč možda istoj dijagnozi i u
kojih je i sama bolest, ali i liječenje kompleksno. Registar bi
svima koji dolazimo u dodir s njima znatno olakšao među-
sobnu komunikaciju i liječenje. Unatoč velikome trudu regi-
star, koji vodimo u KBC-u Zagreb nešto više od godinu dana,
za sada obuhvaća tek nešto više od 350 bolesnika. Nadamo se
da će ovaj, tematski broj potaknuti razmjenu podataka.
Edukacija
. Opće je poznato da su kardiolozi slabije obrazo-
vani kada je posrijedi prirođena srčana bolest jer je većina
nas educirana u vrijeme kada je potreba za liječenjem ova-
kvih bolesnika bila mala. Iako kasnimo za razvijenim ze-
mljama u zbrinjavanju bolesnika s PSBO-om, isti je problem
prisutan i tamo te se u smjernicama4, ali i u raznim članci-
ma govori o kurikulu obrazovanja kadiologa supspecijalista
za PSBO. Smatramo da je važno da neki naši kolege završe
edukaciju koju preporučuje Europsko kardiološko društvo , ali
je još važnije da svi mi postanemo svjesni problema da takve
bolesnike prepoznajemo, da ih pravilno usmjerimo te da se
dalje brinemo za one niže ili srednje kompleksnosti, pružajući
im potrebnu razinu skrbi, bilo u svojoj ustanovi bilo upućujući
ih u specijalizirani centar za PSBO. Kao mali doprinos u po-
stizanju tog cilja željeli smo izdati i tematski broj časopisa.
U ovom su broju tiskani članci koji sadržavaju teme izne-
sene na I. sastanku Radne skupine za PSBO Hrvatskoga kar-
diološkog društva, održanom 12. studenoga 2015. u Hrvatskoj
kući srca u Zagrebu, uz neočekivano veliki interes te sa zado-
voljstvom mogu istaknuti da je dvorana bila puna tijekom ci-
jeloga jednodnevnog sastnaka. Nadamo se da će teme iz ovog
broja časopisa
Cardiologia Croatica
zainteresirati čitatelje, a
iznesene su kao pregledni članci, prikazi slučajeva i stručni
članci te da će prenijeti informacije i poruke koje smo tijekom
sastanka odaslali.
ments needed for a multidiscipli nary approach to these patients.
Based on demographics, Croatia can be expected to have 5-10
thousand such patients, and will need one or two such centers.
A brief article in this issue describes the main characteristics of
such a center. It is especially important to note that all patients
with ACHD should register and receive the rst evaluation at the
center, after which they wil l continue treatment in t heir local in-
stitutions except in extremely complex or extraordinary cases.
Registry
. Establishing a patient registry is very important
as well. Other cardiologic issues have shown how badly we
lack national data, a problem that has been discussed sev-
eral times (acute coronary syndrome registry, percutaneous
coronary intervention registry, etc.). Due to the relatively lim-
ited number of patients with ACHD, we are presented with a
unique opportunity to create a real registry for the rst time in
Croatia, which is especially important for ACHD, since these
are “lifelong” patients with a complex disease that requires
complex treatment due to differences in clinical presentation
even under the same diagnosis. A registry would signicantly
improve communication among all physicians coming into
contact with these patients. Despite great effort, the registry
currently contains just over 350 patients we have had at the
University Hospita l Centre Zagreb for over a year. It is our hope
that this issue of our Journal will encourage data-sharing.
Education
. It is well known that cardiologists lack education
on congenital heart diseases, since most of us received our de-
grees at a time when the need for treatment of these diseases
was small. Although we are behind other countries in the or-
ganization of care for patients with ACHD, the same problem
is present in those countries as well, and guidelines4 as well as
other articles discuss the need for the education of cardiolo-
gists, subspecialists for ACHD. We believe it is important that
some of our colleagues complete courses recommended by the
European Society of Cardiology, but that it is even more impor-
tant that we all become aware of the problem, recognize the
patients, advise them appropriately, and treat cases of lower or
moderate complexity by providing them with an adequate lev-
el of care either in our own institutions or by sending them to
specialized ACHD centers. As a small contribution to this goal,
we decided to dedicate this Journal issue to that topic.
This Journal issue contains articles addressing topics dis-
cussed at the 1st meeting of the ACHD Working Group of the Croa-
tian Ca rdiac Society, which took place in the Croati an Heart House
in Zagreb on November 12, 2015 and was met with great interest. I
can say with plea sure that the conference hall w as full during t he
whole one-day meeting. We hope that readers will nd the topics
addressed in this issue of
Cardiologia Croatica
to be interesting
reading; they are presented as review articles, case reports, and
professional articles and are intended to convey the information
and conclusions we arrived at during the meeting.
Adult Congenital Heart Disease
Cardiologia Croatica
2016;11(1-2):4.
LITERAT URE
1. Strozzi M, B rida M, Anić D. Adu lt Congenita l Heart Disea se Treatment Probl ems in Croatia: Or ganization in a Ter tiary Center an d Report of Thre e Cases. Card iol Croat. 201 5;10(1-2): 3-10.
DOI: http://dx.doi.org/10.15836/ccar.2015.3
2. Šeparov ić Hanževački J, M alčić I, Ivanac Vr anešić I. Con genital hear t diseases in Cro atia — a review of cur rent state and go als. Cardiol Cr oat. 2012;7(1 1-12):276-8 2.
3. Baumga rtner H, Bud ts W, Chessa M, D eanfield J, Eick en A, Holm J, et al; Wo rking Group on G rown-up Conge nital Heart D isease of the Euro pean Society o f Cardiology. Re commendatio ns for
organiz ation of care for ad ults with conge nital heart d isease and for tr aining in the subs pecialty of 'Gr own-up Conge nital Heart D isease' in Europ e: a position pap er of the Working G roup on
Grown-u p Congenital H eart Diseas e of the European S ociety of Cardi ology. Eur Hear t J. 2014;35( 11):686 -90. DOI: http://dx.doi.org/10.1093/eurheartj/eht572
4. Baumgar tner H, Bonho effer P, De Groot NM, de H aan F, Deanfield JE, G alie N, et al; Task Force on t he Management o f Grown-up Cong enital Hear t Disease of the Eu ropean Societ y of Cardiolog y
(ESC); Association for European Paediatric Cardiology (AEPC); ESC Committee for Practice Guidelines (CPG). ESC Guidelines for the management of grown-up congenital heart disease (new
version 2 010). Eur Hear t J. 2010;31 (23):291 5-57. DOI: http://dx.doi.org/10.10 93/eurheartj/ehq249
