Komplementarna potporna terapija za dijete tijekom rehabilitacije i palijativne skrbi

The study included 23 patients (17 male, 6 female) with malignant diseases (brain tumor, Wilms tumor, Ewing’s sarcoma, Hodgkin’s disease) aged 4 to 17 years, admitted at the Children’s Hospital Hematology/Oncology Department, Zagreb. The patients were included in individual complementary supportive therapy programs developed on the concepts of Ex-Gen creative therapy according to diagnosis, clinical picture and needs of each child. For the purpose of this study, the Multicultural Apperception Test TEMAS (“Tell-Me-A-Story”) was used which is both an evaluation instrument and a form of therapy known as guided imagery. The study results show that induced spontaneity and creativity had a prophylactic and therapeutic function. This was observable in children’s newly developed coping mechanisms and an improved quality of life during their complex treatment and rehabilitation.Ispitivanje je provedeno na 23 bolesnika (17 muškaraca, 6 žena) s malignom bolešću (Tumor cerebri, Tumor Wilms, Sarcoma Ewing, Morbus Hodgkin…) u dobi od 4 do 17 godina, hospitaliziranih na Odjelu za onkologiju i hematologiju u Klinici za dječje bolesti u Zagrebu. Pacijenti su bili uključeni u individualne komplementarne suportivno terapijske programe u konceptu Ex-Gen kreativne terapije, koji su bili koncipirani ovisno o dijagnozi, kliničkoj slici i potrebama djeteta. U tu svrhu korišten je multikulturalni test tematske apercijacije TEMAS (Tell-Me-A-Story/Pričaj mi priču) koji je istovremeno i instrument za evaluaciju i oblik terapije u obliku vo|ene imaginacije. Rezultati istraživanja pokazuju da je potaknuta spontanost i kreativnost imala profilaktičku i terapijsku funkciju. To se očitovalo u novim mehanizmima djetetovog suočavanja s bolešću i boljoj kvaliteti života tijekom kompleksnog liječenja i rehabilitacije

Psychosocial oncology and some aspects of complex rehabilitation in adults and children with malignant diseases

Osjećaji i misli koji se pojavljuju u oboljelih od malignih bolesti tijekom dijagnostike, liječenja i rehabilitacije predstavljaju kompleksno problemsko područje za oboljele, društvenu okolinu, kao i za stručnjake iz raznih disciplina u području biomedicinskih, humanističkih, društvenih i drugih znanosti. Način na koji odrasla osoba ili dijete doživljava prijetnju za vlastitu egzistenciju važan je i u njenom suočavanju s bolesti tijekom liječenja i rehabilitacije. Interdisciplinarno područje psihosocijalne onkologije prikazano je i u okviru nekih studijskih programa na raznim sveučilišnim i kliničkim institucijama u svijetu kao i okviru kolegija „Psihosocijalna onkologija“ na Edukacijsko-rehabilitacijskom fakultetu Sveučilišta u Zagrebu. Posebice su prikazana neka istraživanja koja su provođena tijekom liječenja i rehabilitacije osoba oboljelih od raka dojke, kao i u djece sa solidnim malignim tumorima. Istaknuta je potreba adekvatne sveučilišne edukacije stručnjaka u području rehabilitacijskih znanosti kako bi stečenim kompetencijama tijekom studija i/ili nakon raznih programa specijalizacije, bili u mogućnosti pružiti komplementarne oblike psihoemocionalne i psihosocijalne podrške oboljelima.The emotions and thoughts that appear in people with malignant diseases during diagnostics, treatment and rehabilitation, represent a complex problem area for the patient, social enviroment, as well as professionals from biomedical, humanities, social and other sciences. The way that an adult or child experiences the threat to it´s own existence is very important when coping with their disease during treatment and rehabilitation. Psychosocial oncology as an interdisciplinary field of study is presented within some study programs at various universities and clinical institutions worldwide and within the course „Psychosocial oncology“ at the Faculty of Education and Rehabilitation Sciences at the University of Zagreb. Some clinical and scientific researches that were conducted during the treatment and rehabilitation of patients with breast cancer, as well as in children with solid malignant tumors are shown. The need for adequate university education of professionals in the field of rehabilitation sciences is emphasized, so they may be abled with their acquired competencies during their studies and/or after various specializations, to provide complementary forms of psychoemotional and psychosocial support to patients

Considering Parents of Malignant ill Children in COVID-19 Health Crisis

Aim: Parents of children suffering from malignant diseases indubitably represent a very dainty population, underrepresented in psychosocial research. It is common for these parents to move to the hospital wards in order to support their children, which causes an unnatural cut in their lifeline, in addition to coping with terrifying diagnosis. Coping with a child’s malignant disease includes a continuous feeling of fear and concern, and change in the overall family dynamics, but also the cessation of daily life activities, even outside the context of a global pandemic, some pre-COVID research had shown. COVID-19 brought some additional challenges. In order to protect children’s fragile physical state, parents were obliged to adapt to new rules and distance from the others even more. At the same time, their fears and worries grew only bigger and coping mechanisms were seriously limited. Subjects and Methods: In this paper we investigate parental experiences and needs during COVID-19 crisis. Semi-structured in-depth interviews were conducted with ten mothers with experience of children’s in-patient treatment before and during pandemics. Results: According to main findings, theoretical model of parental adjustment and wellbeing in health crisis is proposed. Conclusion: Results imply the necessity to consider parental psychological wellbeing in order to support them and their children, especially when additional stressful and/or traumatic experiences emerge, and treat them as especially vulnerable group in research and practice

Metastaze u nosnoj šupljini, paranazalnim sinusima i nazofarinksu - prikazi sluučajeva

Uvod: Metastaze u nosnu šupljinu, paranazalne sinuse i nazofarinks su rijetke, ali ako su prisutne tada je najčešće sijelo maksilarni sinus. Prateći simptomi metastaze u navedenim sijelima mogu imitirati druga benigna i češća stanja, a prava etiologija se može predvidjeti i propustiti tijekom duljeg razdoblja. Prikaz slučaja: Prikazujemo dva slučaja s prisutnim tumorskim tvorbama u nosnoj šupljini, paranazalnim sinusima i nazofarinksu s različitom kliničkom slikom i konačnim ishodom. Prvi je slučaj šesnaestogodišnjeg bolesnika sa suspektnom metastazom ekstraosealnog Ewingovog sarkoma lijeve potkoljenice u nazofarinks i desni maksilarni sinus. Sumnja je postavljena nakon snimanja PET/CT-a, a bolesnik nije imao tegobe od strane nosa i paranazalnih šupljina. Patohistološka analiza bioptata ukazala je na upalne promjene bez tumorskih stanica. Drugi je slučaj pedesetsedmogodišnje bolesnice koja se žalila na otežano disanje i učestale epistakse iz lijeve nosnice. Kliničkim pregledom i radiološkom obradom bila je vidljiva tumorska tvorba u lijevom nosnom kavumu, a patohistološka analiza bioptata ukazala je na metastazu karcinoma bubrega. Zaključak: Metastaze u nosnu šupljinu, paranazalne sinuse i nazofarinks vrlo su rijetke. Mogući je širok spektar pratećih simptoma, a njihova odsutnost ne isključuje mogućnost prisutnosti metastaze. Svaki patološki nalaz utvrđen kliničkim pregledom ili radiološkom obradom, te prisutnost tegoba od strane nosa i paranazalnih sinusa kod bolesnika s malignom bolešću zahtjeva pregled i obradu otorinolaringologa

Invazivne gljivične infekcije u djece liječene zbog hematoloških malignih bolesti - petogodišnje iskustvo

Invasive fungal infections (IFI) are life-threatening complications of intensive chemotherapy treatment, with the incidence in pediatric patients ranging from 2% to 21%. In this article, we describe our 5-year experience of IFI in pediatric oncology patients and its clinical manifestations with radiological findings, treatment and outcome. A retrospective and descriptive survey of IFI in children with hematologic neoplasms was conducted at the Department of Oncology and Hematology, Zagreb Children’s Hospital. Medical charts of children 0-17 years of age, of both sexes, treated for leukemias and lymphomas from January 2016 to December 2020 were reviewed. In a 5-year period, 60 patients were treated for hematologic malignancy, acute lymphoblastic leukemia (ALL) being the most prevalent diagnosis. IFI was verified in 9 (15%) children, predominantly in patients with ALL (75%). The specific causative agent was detected in one child, whereas other infections were classified as probable pulmonary aspergillosis. All the patients received standard prophylaxis with fluconazole and treatment with liposomal amphotericin B and voriconazole. The majority of our patients achieved recovery. IFI prevention, diagnosis and treatment remain a challenge. Uniform prophylaxis and therapy protocols, as well as environmental control are of vital importance for the development of better strategies in the prevention, early detection and treatment of IFI in pediatric hematology patients.Invazivne gljivične infekcije (IFI) životno su ugrožavajuće komplikacije liječenja hematoonkoloških bolesnika, učestalost kojih je od 2% do 21%. Ovaj članak prikazuje naše petogodišnje iskustvo s IFI u pedijatrijskih onkoloških bolesnika, njihove kliničke prezentacije te ishoda liječenja. U Zavodu za onkologiju i hematologiju Klinike za dječje bolesti Zagreb provedeno je retrospektivno i deskriptivno istraživanje učestalosti IFI u djece u dobi od 0-17 godina oboljele od hematoloških malignih bolesti. Pretraženi su medicinski podaci djece oba spola koja su liječena u Zavodu zbog leukemije i limfoma u razdoblju od siječnja 2016. do prosinca 2020. godine. U petogodišnjem razdoblju hematološka bolest dijagnosticirana je u 60 bolesnika, a prevladavala je dijagnoza akutne limfoblastične leukemije (ALL). IFI je dijagnosticirana kod 9 bolesnika, pretežito kod onih oboljelih od ALL. Specifični uzročnik dokazan je u samo jednog bolesnika. Svi bolesnici primili su standardnu profilaksu flukonazolom te terapiju liposomnim amfotericinom B i vorikonazolom. U većine bolesnika postignut je oporavak. Poboljšanje prevencije i liječenja IFI moglo bi se postići postojanjem ujednačenih protokola za profilaksu i liječenje kao i bolje kontrole koncentracije gljivičnih spora u bolesničkim sobama

Plač bez glasa. Laringealna papilomatoza u djece (RRP) - mijenja li se pristup liječenju?

Rad prikazuje novi pristup u liječenju rekurirajuće respiratorne papilomatoze (RRP). Liječenje dječje rekurentne respiratorne papilomatoze i dalje uključuje učestale i agresivne operacijske postupke, kako bi se postigla prohodnost dišnih putova i osigurala kvaliteta glasa. Tim načinom liječenja narušava se kvaliteta života djece, a nerijetko postoji potreba za hitnim operacijskim zahvatima, pa čak i privremenom traheotomijom zbog stridoroznog disanja i respiracijske insuficijencije. Kako bi se broj operacijskih zahvata smanjio na minimum, istraživana je lokalna primjena lijekova adjuvantno u papilomatozne lezije respiratorne sluznice. Također, cijepljenjem protiv HPV-a postižu se rezultati u sprječavanju ove bolesti. Najčešće korišteni lijekovi u liječenju RRP su cidofovir i bevacizumab. U posljednjih desetak godina, postoje studije koje daju nadu u učinak bevacizumaba primijenjenog lokalno i sustavno. Sustavna primjena rezervirana je za bolesnike koji trebaju više od 4 operacije godišnje, koji imaju brzi recidiv bolesti s opstrukcijom dišnih putova, te imaju distalno širenje bolesti. Bevacizumab je monoklonsko protutijelo koje se selektivno veže na krvožilni endotelni faktor rasta (VEGF), a registriran je za sistemsku primjenu unutar indikacijskih okvira koji, za sada, ne uključuju rekurentnu respiratornu papilomatozu. Na temelju znanstvene literature koja aktualno istražuje djelovanje sistemski primijenjenog bevacizumaba u rekurentnoj respiratornoj papilomatozi, prikazujemo slučaj uspješnog kombiniranog kirurškog i adjuvantnog liječenja bolesti u djeteta čiji je tretman započet u dobi od 18 mjeseci

Plač bez glasa. Laringealna papilomatoza u djece (RRP) - mijenja li se pristup liječenju?

Rad prikazuje novi pristup u liječenju rekurirajuće respiratorne papilomatoze (RRP). Liječenje dječje rekurentne respiratorne papilomatoze i dalje uključuje učestale i agresivne operacijske postupke, kako bi se postigla prohodnost dišnih putova i osigurala kvaliteta glasa. Tim načinom liječenja narušava se kvaliteta života djece, a nerijetko postoji potreba za hitnim operacijskim zahvatima, pa čak i privremenom traheotomijom zbog stridoroznog disanja i respiracijske insuficijencije. Kako bi se broj operacijskih zahvata smanjio na minimum, istraživana je lokalna primjena lijekova adjuvantno u papilomatozne lezije respiratorne sluznice. Također, cijepljenjem protiv HPV-a postižu se rezultati u sprječavanju ove bolesti. Najčešće korišteni lijekovi u liječenju RRP su cidofovir i bevacizumab. U posljednjih desetak godina, postoje studije koje daju nadu u učinak bevacizumaba primijenjenog lokalno i sustavno. Sustavna primjena rezervirana je za bolesnike koji trebaju više od 4 operacije godišnje, koji imaju brzi recidiv bolesti s opstrukcijom dišnih putova, te imaju distalno širenje bolesti. Bevacizumab je monoklonsko protutijelo koje se selektivno veže na krvožilni endotelni faktor rasta (VEGF), a registriran je za sistemsku primjenu unutar indikacijskih okvira koji, za sada, ne uključuju rekurentnu respiratornu papilomatozu. Na temelju znanstvene literature koja aktualno istražuje djelovanje sistemski primijenjenog bevacizumaba u rekurentnoj respiratornoj papilomatozi, prikazujemo slučaj uspješnog kombiniranog kirurškog i adjuvantnog liječenja bolesti u djeteta čiji je tretman započet u dobi od 18 mjeseci

Considering Parents of Malignant ill Children in COVID-19 Health Crisis

Aim: Parents of children suffering from malignant diseases indubitably represent a very dainty population, underrepresented in psychosocial research. It is common for these parents to move to the hospital wards in order to support their children, which causes an unnatural cut in their lifeline, in addition to coping with terrifying diagnosis. Coping with a child’s malignant disease includes a continuous feeling of fear and concern, and change in the overall family dynamics, but also the cessation of daily life activities, even outside the context of a global pandemic, some pre-COVID research had shown. COVID-19 brought some additional challenges. In order to protect children’s fragile physical state, parents were obliged to adapt to new rules and distance from the others even more. At the same time, their fears and worries grew only bigger and coping mechanisms were seriously limited. Subjects and Methods: In this paper we investigate parental experiences and needs during COVID-19 crisis. Semi-structured in-depth interviews were conducted with ten mothers with experience of children’s in-patient treatment before and during pandemics. Results: According to main findings, theoretical model of parental adjustment and wellbeing in health crisis is proposed. Conclusion: Results imply the necessity to consider parental psychological wellbeing in order to support them and their children, especially when additional stressful and/or traumatic experiences emerge, and treat them as especially vulnerable group in research and practice

Komplementarna potporna terapija za dijete tijekom rehabilitacije i palijativne skrbi

The study included 23 patients (17 male, 6 female) with malignant diseases (brain tumor, Wilms tumor, Ewing’s sarcoma, Hodgkin’s disease) aged 4 to 17 years, admitted at the Children’s Hospital Hematology/Oncology Department, Zagreb. The patients were included in individual complementary supportive therapy programs developed on the concepts of Ex-Gen creative therapy according to diagnosis, clinical picture and needs of each child. For the purpose of this study, the Multicultural Apperception Test TEMAS (“Tell-Me-A-Story”) was used which is both an evaluation instrument and a form of therapy known as guided imagery. The study results show that induced spontaneity and creativity had a prophylactic and therapeutic function. This was observable in children’s newly developed coping mechanisms and an improved quality of life during their complex treatment and rehabilitation.Ispitivanje je provedeno na 23 bolesnika (17 muškaraca, 6 žena) s malignom bolešću (Tumor cerebri, Tumor Wilms, Sarcoma Ewing, Morbus Hodgkin…) u dobi od 4 do 17 godina, hospitaliziranih na Odjelu za onkologiju i hematologiju u Klinici za dječje bolesti u Zagrebu. Pacijenti su bili uključeni u individualne komplementarne suportivno terapijske programe u konceptu Ex-Gen kreativne terapije, koji su bili koncipirani ovisno o dijagnozi, kliničkoj slici i potrebama djeteta. U tu svrhu korišten je multikulturalni test tematske apercijacije TEMAS (Tell-Me-A-Story/Pričaj mi priču) koji je istovremeno i instrument za evaluaciju i oblik terapije u obliku vo|ene imaginacije. Rezultati istraživanja pokazuju da je potaknuta spontanost i kreativnost imala profilaktičku i terapijsku funkciju. To se očitovalo u novim mehanizmima djetetovog suočavanja s bolešću i boljoj kvaliteti života tijekom kompleksnog liječenja i rehabilitacije

Dinutuximab Beta in Children with High-Risk Neuroblastoma: Experience from a Single Center in Croatia

To determine the potential benefits and feasibility of administering maintenance therapy with dinutuximab beta for high-risk neuroblastoma (HRNB) in clinical practice, a retrospective review of charts of patients with HRNB treated at a single center in Croatia (2012–2021) was undertaken. Of 23 patients with HRNB, 11 received up to five cycles of dinutuximab beta as part of multimodal therapy; 12 patients did not (i.e., no immunotherapy). In the no immunotherapy group, one patient had complete remission (8%), and 11 patients died of tumor progression (92%). In the dinutuximab beta group, eight patients had complete remission (73%; median duration of response 5 years and 2 months), one had stable disease (9%), and two died of disease (18%). Patients who received dinutuximab beta had a higher median event-free survival (40.0 months [range: 12.5–83.0]) and median overall survival (56.0 months [range: 16.2–101.0]) than those who did not (12.9 months [range: 3.3–126.0] and 20.7 months [3.3–126.0], respectively). Dinutuximab beta was generally well tolerated; adverse events were manageable and as reported in clinical studies. These results confirm the benefits and feasibility of maintenance therapy with dinutuximab beta as part of multimodal therapy for patients with HRNB in real-world clinical practice