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zanato, Silvia (2016) Studio sulle implicazioni psicoaffettive nel trapianto di cellule staminali emopoietiche (HSCT). Analisi retrospettiva in un campione di soggetti e famiglie dopo almeno 5 anni dal trapianto. [Tesi di dottorato]

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Abstract (inglese)

Background.Hematopoietic stem cell transplantation (HSCT) is now the therapeutic treatment for malignant and nonmalignant hematologic diseases and could represent a challenge to pediatric patients and their families. Advances in HSCT procedure have significantly increased the number of HSCT performed each year and have improved long term survival rates, so studies have shifted their focus from survival time to Quality of Life (QoL).
Childhood HSCT survivors have been shown to be prone to develop psychological, cognitive, social and familiar, as well as medical, adverse outcomes. (Khera et al., 2012; Syrjala et al., 2012).
The aim of the present study is to evaluate psychosocial and behavioral features and QoL of childhood HSCT survivors and their families (including siblings).
Secondary aims are to evaluate the level of agreement between survivor-parents reports as for psychopathological areas and QoL; to evaluate parental stress and finally to identify risk and protective factors for mental health.
Methods. Paediatric HSCT survivors (at least 5 years post transplantation) and their parent each completed a questionnaire package that included Achenbach test (Child Behaviour Checklist-CBCL; Youth Self Report-YSR), Pediatric Quality of Life Inventory 4.0 (PedsQL) and a brief unstructured text. Parents were also asked to complete an anamnestic interview and two other test: Short Form-36 (SF-36) and Parenting Stress Index scale (PSI). Siblings were asked to complete YSR and a brief unstructured text.
Data were analysed using SPSS software.
Results From 2012, 37 pediatric HSCT survivors (62% male) were enrolled in the study. The age at HSCT was 10 yrs on average (range 0,7-11,2 yrs). Fifty four percent of survivors were treated with allogenic unrelated HSCT. Seventy-four parent and 38 siblings were also tested.
YSR scores exceeded the normative cut off for total competences (22%), social competences (13%) and somatic complains (8%), while CBCL scores were mainly pathological for total competences (49%), activities (22%) and somatic symptoms (11%). Symptoms reported to CBCL were more if: the survivor is female, there were a allogenic related HSCT, there were medical toxicities and if timing since communication of therapeutic choice and HSCT were longer. CBCL and YSR present a good level of agreement only for total competences scale (K=0.06, p= 0.002), somatic symptoms (K=0.21, p= 0.003) and attention problems (k=0.13; p=0.02).
As for PedsQL, there was a poor level of agreement between survivors and parents only for physical area (K=0.05; p=0.31) and emotional area (K=0.09; p=0.06).
In SF-36 mothers, perceive a worse QoL for “role limitation” scale when they have only one child or more than three children, if timing since communication and HSCT was brief and if survivor was treated with allogenic related HSCT. Fathers perceive a worse mental health if they have one child or more than two children, and if they were married.
Siblings who were closer to survivor appear to present a worse QoL according to parents.
Conclusion. Pediatric HSCT survivors present psychological distress in many areas (internalizing, externalizing, attention and social areas), with a prevalence of somatic symptoms.As for QoL, parents report better emotional function and lower physical function of the survivor. The first sibling appears to perceive a worse QoL. Mother and father perceive different kind of distress, but having two children appears to be homogeneously protective.
Studies are needed to explore discordant perception and finally to improve outcomes and care for pediatric HSCT patients and their families.

Abstract (italiano)

Premesse. Il trapianto di cellule staminali ematopoietiche (HSCT) rappresenta ad oggi la terapia per alcune patologie ematologiche maligne e non maligne e costituisce una sfida per iI paziente in età pediatrica e per la sua famiglia. Il progresso medico relativo alla procedura di HSCT ha significativamente aumentato il numero di trapianti eseguiti ogni anno ed ha migliorato le percentuali di sopravvivenza a lungo termine, pertanto gli studi scientifici hanno spostato il loro focus dalla valutazione dei tassi di sopravvivenza all’esplorazione della Qualità di Vita (QoL).
I sopravvissuti a HSCT avvenuto in età pediatrica sono stati dimostrati essere una popolazione più suscettibile allo sviluppo di sequele psicologiche, cognitive, sociali e familiari, oltre che mediche (Khera et al., 2012; Syrjala et al., 2012).
L’obiettivo dello studio è la valutazione degli aspetti psicosociali e comportamentali oltre che della QoL dei soggetti pediatrici sopravvissuti ad HSCT e delle loro famiglie (includendo i fratelli).
Obiettivi secondari sono: la valutazione del livello di accordo tra survivor e genitori relativamente agli aspetti psicopatologici ed alla QoL, la valutazione dello stress genitoriale e infine l’identificazione di fattori di rischio e fattori protettivi per la salute mentale di questi soggetti.
Metodo. Sono stati testati soggetti pediatrici sopravvissuti ad HSCT (almeno 5 anni dopo il trapianto) e i loro genitori. Ad ognuno è stato richiesto di completare una batteria di test che includeva i questionari di Achenbach (Child BehaviourChecklist-CBCL; Youth Self Report-YSR) e il PediatricQuality of Life Inventory 4.0 (PedsQL) e di produrre un breve testo libero. Ai genitori è stata richiesto inoltre di completare una intervista anamnestica ed ulteriori due test: il Short Form-36 (SF-36) e il Parenting Stress Index (PSI). Ai fratelli del sopravvissuto è stato chiesto di completare la YSR e di produrre un breve testo libero.
I dati sono stati elaborati con l’utilizzo del software SPSS.
Risultati. Dal 2012 sono stati reclutati 37 soggetti sopravvissuti ad HSCT (62% maschi). L’età media al momento dell’HSCT era 10 anni (range 0,7-11,2 anni). Cinquantaquattro percento dei sopravvissuti era stato sottoposto a trapianto allogenico non familiare. Sono stati inoltre testati 74 genitori e 38 fratelli. I punteggi dello YSR superano i cut off per competenze totali (22%), competenze sociali (13%) e lamentele somatiche (8%), mentre i punteggi alle CBCL risultano patologici principalmente nelle aree di competenze totali (49%), attività (22%) e sintomi somatici (11%). I sintomi riportati alla CBCL appaiono più significativi se: il sopravvissuto è femmina, in caso di trapianto allogenico familiare, presenza di tossicità mediche e se il tempo intercorso tra la comunicazione della scelta terapeutica e l’HSCT era più lungo. CBCL e YSR presentano un buon grado di accordo solo relativamente alle scale competenze totali (K=0.06, p= 0.002), sintomi somatici (K=0.21, p= 0.003) e problemi di attenzione (k=0.13; p=0.02).
Rispetto alla PedsQL genitori e survivor non appaiono in accordo per l’area fisica (K=0.05; p=0.31) ed emotiva (K=0.09; p=0.06).
Nella SF-36 le madri percepiscono una peggiore QoL nella scala relativa alla “limitazione del ruolo” quando hanno un solo figlio o più di tre figli, se il tempo intercorso tra la comunicazione della scelta terapeutica e l’HSCT è breve e in caso di trapianto allogenico familiare. I padri percepiscono una salute mentale peggiore se hanno un unico figlio o più di due e se sono sposati. I fratelli più vicini al sopravvissuto per ordine di genitura sembrano presentare una peggiore QoL secondo i genitori.
Conclusioni.I soggetti sopravvissuti a HSCT in età pediatrica presentano livelli di stress psicologico in diverse aree (internalizzante, esternalizzante, dell’attenzione e della socializzazione), con una prevalenza di sintomi somatici.
Rispetto alla QoL, i genitori riportano un funzionamento emotivo del sopravvissuto migliore a fronte di un peggiore funzionamento fisico. Il primo fratello sembra percepire una QoL peggiore. Madri e padri percepiscono diversamente il proprio distress, ma il fatto di avere due figli appare rappresentare in modo omogeneo un fattore protettivo.
Saranno necessari ulteriori studi per approfondire la discordanza tra le percezioni e infine migliorare l’outcome e la cura dei pazienti pediatrici sottoposti ad HSCT e delle loro famiglie.

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Tipo di EPrint:Tesi di dottorato
Relatore:Messina, Chiara
Correlatore:Messina, Chiara
Dottorato (corsi e scuole):Ciclo 27 > scuole 27 > MEDICINA DELLO SVILUPPO E SCIENZE DELLA PROGRAMMAZIONE > "EMATOONCOLOGIA, GENETICA, MALATTIE RARE E MEDICINA PREDITTIVA"
Data di deposito della tesi:01 Luglio 2016
Anno di Pubblicazione:01 Luglio 2016
Parole chiave (italiano / inglese):Hematopoietic stem cell transplantation (HSCT) psychosocial and behavioral features CBCL, YSR, QoL, PSI HSCT survivors, parents and siblings
Settori scientifico-disciplinari MIUR:Area 06 - Scienze mediche > MED/39 Neuropsichiatria infantile
Struttura di riferimento:Dipartimenti > Dipartimento di Salute della Donna e del Bambino
Codice ID:9659
Depositato il:31 Ott 2017 17:21
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