CHRONIC DISEASE AND HEALTH CONDITION PREVENTION IN CHILDHOOD – 2nd part: EMPHASES FROM THE 14th SYMPOSIUM OF PREVENTIVE PEDIATRICS

Kronično bolesne djece danas je u razvijenim društvima sve više, a zbog modernih terapijskih mogućnosti sve više djece preživljava do odrasle dobi. Duži životni vijek ne znači nužno i bolju kakvoću života. S kronično bolesnim djetetom važan je holistički pristup koji uključuje ne samo ostvarivanje najviših mogućih standarda u dijagnostici i liječenju već i posebnu brigu za prevenciju bolesti. Sve je to važno u tzv. integrativnom pristupu u pomoći djetetu s kroničnim poremećajem, s ciljem postizanja što bolje kakvoće života i što potpunije socijalne integracije. Na XIV. simpoziju preventivne pedijatrije, održanom u Skradu 1. lipnja 2013., razmatrani su, s preventivnoga gledišta, ovi kronični poremećaji u dječjoj dobi: poremećaj pozornosti s hiperaktivnošću, migrenozne glavobolje, bolesti štitnjače, leukemije, cistična fibroza, kronična bubrežna bolest, kronične upalne bolesti jetre, kronične upalne bolesti crijeva, juvenilni idiopatski artritis te kronični sekretorni otitis. Naglašeno je da kada se govori o prevenciji, prilikom razmatranja određene bolesti na umu treba imati tri oblika prevencije – primarnu, sekundarnu i tercijarnu, a to znači: kako smanjiti pojavnost bolesti, kako je rano otkriti i ispravno liječiti te naposljetku kako poboljšati kakvoću života djeteta s kroničnom bolesti. Kvartarna prevencija, s ciljem smanjenja polipragmazije, uključuje mjere za ublažavanje ili izbjegavanje rezultata nepotrebnih ili suvišnih intervencija zdravstvenog sustava. Važan je proces i prijenos skrbi o pacijentu iz dječje dobi u odraslu dob. U odrasloj dobi važan je nastavak praćenja i nadzor kroničnog stanja, zbog mogućeg razvoja kasnih posljedica kronične bolesti u djetinjstvu.Chronically ill children nowdays in developed countries are more prevalent than before, and thanks to modern therapeutic modalities more children are surviving into adulthood. Increased survival cannot be assumed to be associated with increased quality of life. With the chronically ill child holistic approach is important, which incorporates not only realisation of the highest possible standards in diagnostics and treatment, but also special care for disease prevention. All this is very important in so called integrative approach in the care of a chronically ill child, with the aim of achieving as high as possible quality of life and complete social integration. At the 14th Preventive Pediatrics Symposium, which took place in Skrad, June 1st 2013, from preventive standpoint, the following chronic childhood illnesses were discussed: attention deficit hyperactivity disorder – ADHD, migraine, thyroid gland diseases, leukemia, cystic fibrosis, chronic renal disease, chronic inflammatory liver disease, chronic inflammatory bowel disease, juvenile idiopathic arthritis, and chronic otitis media with effusion. It is emphasized that talking about a disease prevention, there are three levels of it – primary, secondary and tertiary prevention: how to avoid occurrence of disease, how to diagnose and treat existent disease in early stages, before it causes significant morbidity, and finally how to reduce the negative impact of existent disease by restoring function and reducing disease-related complications – how to improve quality of life of children with chronic diseases. Quaternary prevention describes methods to mitigate or avoid results of unnecessary or excessive interventions of the health system. An important process is also transition of care from child-oriented to adult-oriented care. Adults with chronic health conditions should continue to be evaluated periodically for possible late consequences of their childhood illness and previous medical treatments

CHRONIC DISEASE AND HEALTH CONDITION PREVENTION IN CHILDHOOD: EMPHASES FROM THE 13th SYMPOSIUM OF PREVENTIVE PEDIATRICS

Kronične bolesti u djece postaju sve veći prioritet, osobito u razvijenim zemljama, zbog relativno i apsolutno veće učestalosti. Uz to je specifičnost kronično bolesnog djeteta u tome što neprimjereni postupci mogu rezultirati poremećajem njegova rasta i razvoja. Prema podatcima iz literature 15–20% djece ima kroničnu bolest koja utječe na njihov fizički, mentalni i emocionalni status. Kada se govori o prevenciji prilikom razmatranja određene bolesti, na umu treba imati tri vida prevencije – primarnu, sekundarnu i tercijarnu, što u osnovi znači kako smanjiti pojavnost bolesti, kako je rano otkriti i ispravno liječiti te naposljetku kako poboljšati kakvoću života djeteta s kroničnom bolesti. Sve se više govori i o kvartarnoj prevenciji radi smanjenja polipragmazije. U radu se navode recentna mišljenja o mogućnostima prevencije kroničnih bolesti u djetinjstvu, koje na početku 21. stoljeća postaju sve aktualnije i novi su izazov u zdravstvenoj zaštiti djece. Tako se s preventivnoga gledišta razmatraju ove kronične bolesti: astma, maligne bolesti, autizam, epilepsija, cerebralna paraliza, tuberkuloza, šećerna bolest tipa 1, prirođene srčane grješke, arterijska hipertenzija, celijakija te poremećaji hranjenja. Navedena su mišljenja iznesena na XIII. simpoziju preventivne pedijatrije, održanom u Skradu 2. lipnja 2012. Daljnjim aktivnostima namjerava se nastaviti promicanje skrbi za djecu oboljelu i od ostalih kroničnih bolesti i stanjaChronic diseases in childhood have become an important priority, especially in developed countries, because of higher prevalence, relatively and absolutely. Besides that, inappropriate procedures a chronically ill child can result in child’s growth and development disorder. According to literature data, 15–20% of children have chronic disease with the impact on their physical, mental and emotional status. Disease prevention strategies are described at the primary, secondary and tertiary level: how to avoid occurrence of disease, how to diagnose and treat existent disease in early stages, before it causes significant morbidity, and finally how to reduce negative impact of existent disease by restoring function and reducing disease-related complications – how to improve quality of life of children with chronic diseases. The new term of quaternary prevention describes methods to mitigate or avoid results of unnecessary or excessive interventions in the health system. In this paper the authors present recent attitudes about chronic diseases prevention modalities in childhood, which, at the beggining of the 21st century, have become more intriguing and represent a new challenge for pediatric health care. Thus, from preventive standpoint, the following chronic illnesses are discussed: asthma, malignant diseases, autism, epilepsy, cerebral palsy, tuberculosis, diabetes type 1, congenital heart diseases, arterial hypertension, celiac disease, and eating disorders. These emphases are from the 13th Preventive Pediatrics Symposium, which took place in Skrad, June 2nd, 2012. Further activities are planned with the aim of continuation of health care furtherance for children with other chronic illnesses

Bol i palijativna medicina – tempus projekt u Hrvatskoj

Pain and Palliative Medicine Project (PPMP), funded by the TEMPUS programme of the European Union, has been established with a goal of sharing knowledge and experience from countries in which palliative care is already substantially developed to partner countries whose palliative care encountered more problems. Croatia as partner country, has tried to improve national palliative care systems through education of medical and non-medical personnel. Protocols of collaboration and training courses in pain management and palliative medicine at the Universities of Florence and Lyon, including options of collaboration with some university and clinical institutions in Croatia have been presented. After their two-year project, the Croatian team has noted significant progress in the fields of education, infrastructure and legislative support for development of palliative care. These results show the need for improving Croatian palliative care system as well as possible solutions for overcoming obstacles derived from nation’s traditional views on the treatment of the terminally ill.Bol i palijativna medicina (PPMP) je projekt u okviru TEMPUS programa Europske Unije s ciljem prenošenja znanja i iskustava zemalja, u kojima je palijativna skrb dobro razvijena, zemljama u kojima je palijativna skrb manje aktivna. Hrvatska, kao zemlja partner, nastoji poboljšati nacionalni program palijativne skrbi kroz edukaciju medicinskog i ne-medicinskog osoblja. Prikazani su protokoli suradnje i tečajeva o boli i palijativnoj medicine na Sveučilištima u Firenci i Lyonu, kao i na nekim sveučilišnim i kliničkim institucijama u Hrvatskoj. Nakon dvogodišnjeg projekta hrvatski tim zabilježio je značajni napredak u poljima edukacije, infrastrukture i zakonske potpore razvoju palijativne skrbi. Ovi rezultati su pokazali potrebu za daljnjim poboljšavanjem hrvatske palijativne skrbi kao i moguća rješenja za prevladavanje prepreka koje proizlaze iz tradicionalnih pogleda društva na skrb terminalno bolesnih

Bol i palijativna medicina – tempus projekt u Hrvatskoj

Pain and Palliative Medicine Project (PPMP), funded by the TEMPUS programme of the European Union, has been established with a goal of sharing knowledge and experience from countries in which palliative care is already substantially developed to partner countries whose palliative care encountered more problems. Croatia as partner country, has tried to improve national palliative care systems through education of medical and non-medical personnel. Protocols of collaboration and training courses in pain management and palliative medicine at the Universities of Florence and Lyon, including options of collaboration with some university and clinical institutions in Croatia have been presented. After their two-year project, the Croatian team has noted significant progress in the fields of education, infrastructure and legislative support for development of palliative care. These results show the need for improving Croatian palliative care system as well as possible solutions for overcoming obstacles derived from nation’s traditional views on the treatment of the terminally ill.Bol i palijativna medicina (PPMP) je projekt u okviru TEMPUS programa Europske Unije s ciljem prenošenja znanja i iskustava zemalja, u kojima je palijativna skrb dobro razvijena, zemljama u kojima je palijativna skrb manje aktivna. Hrvatska, kao zemlja partner, nastoji poboljšati nacionalni program palijativne skrbi kroz edukaciju medicinskog i ne-medicinskog osoblja. Prikazani su protokoli suradnje i tečajeva o boli i palijativnoj medicine na Sveučilištima u Firenci i Lyonu, kao i na nekim sveučilišnim i kliničkim institucijama u Hrvatskoj. Nakon dvogodišnjeg projekta hrvatski tim zabilježio je značajni napredak u poljima edukacije, infrastrukture i zakonske potpore razvoju palijativne skrbi. Ovi rezultati su pokazali potrebu za daljnjim poboljšavanjem hrvatske palijativne skrbi kao i moguća rješenja za prevladavanje prepreka koje proizlaze iz tradicionalnih pogleda društva na skrb terminalno bolesnih

Ventriculoperitoneal shunt as a risk factor for extraneural dissemination of atypical teratoid/rhabdoid tumor in children

Atipični teratoidni/rabdoidni tumor (ATRT) rijetki je, ali agresivni maligni tumor središnjeg živčanog sustava (SŽS), koji se uglavnom javlja kod djece mlađe od tri godine. Unatoč niskoj učestalosti, ATRT čini značajan udio embriogenih tumora SŽS-a, posebno u prvoj godini života. Prognoza za pacijente s ATRT-om općenito je loša, s značajnim padom stopa preživljavanja kada se otkrije metastaza pri dijagnozi. Liječenje uključuje multimodalni pristup koji obuhvaća kirurgiju, radioterapiju i kemoterapiju, iako su rezultati i dalje suboptimalni, posebno u slučajevima s mlađom dobi pri dijagnozi i metastazama. ATRT pokazuje specifične radiološke i histopatološke karakteristike, što predstavlja izazove u dijagnostici i planiranju liječenja. Dodatno, ekstraneuralno metastatsko širenje ATRT-a, iako rijetko, može se dogoditi, pri čemu su ventrikuloperitonealni (VP) šuntovi identificirani kao potencijalne rute širenja. Predstavljamo izuzetno rijedak slučaj ekstraneuralnog širenja u trbušnu šupljinu duž ventrikuloperitonealnog šanta kod dječaka u dobi od 4 godine. Ovo je vrsta ekstraneuralnog širenja kod djece koja je objavljena samo jednom, a mi smo prvi koji je predstavljamo u Hrvatskoj. Ovaj prikaz slučaja ističe dijagnostičke i terapijske kompleksnosti povezane s ATRT-om, naglašavajući važnost staginga, genetske evaluacije i redovnih kontrola zbog potencijalnog metastatskog širenja putem VP šanta. Nadalje, ističemo potrebu za daljnjim istraživanjem radi poboljšanja ishoda liječenja i identifikacije prognostičkih čimbenika za stratifikaciju rizika kod pedijatrijskih pacijenata s ATRT-om.Atypical teratoid/rhabdoid tumor (ATRT) is a rare but aggressive malignancy of the pediatric central nervous system (CNS), predominantly affecting children under the age of three. Despite its low frequency, ATRT constitutes a notable proportion of embryonal CNS tumors, particularly within the first year of life. The prognosis for ATRT patients is generally poor, with a significant decline in survival rates when metastasis is detected at diagnosis. Treatment typically involves a multimodal approach including surgery, radiation therapy, and chemotherapy, although outcomes remain suboptimal, especially in cases with younger age at diagnosis and metastases. ATRT exhibits distinct radiological and histopathological characteristics, presenting challenges in diagnosis and treatment planning. Additionally, extraneural metastatic spread of ATRT, although rare, can occur, with ventriculoperitoneal (VP) shunts identified as potential routes for dissemination. We present an extremely rare case of extraneural dissemination into the abdominal cavity along ventriculoperitoneal shunt in a 4-year-old boy. This is a type of extraneural dissemination in children that has only been published once and we are the first to present in Croatia.This case report highlights the diagnostic and therapeutic complexities associated with ATRT, emphasizing the importance of comprehensive staging, genetic evaluation, and vigilant surveillance for potential metastatic spreading via VP shunt. Furthermore, it emphasizes the need for further research to improve treatment outcomes and identify prognostic factors for risk stratification in pediatric patients with ATRT