La percezione della disabilità con il questionario ICF-CY : il punto di vista del sanitario e del caregiver. Dati preliminari in una popolazione di bambini con ritardo mentale

Riassunto Introduzione e background: l\u2019ICF-CY (International Classification of Functioning, Disability and Health Children and Young), costituisce uno strumento importante per la valutazione olistica della salute. L\u2019ICF consente di indagare aspetti relativi alle Funzioni e alle Strutture Corporee, ad Attivit\ue0 e Partecipazione e ai Fattori Ambientali implicati nello stato di salute del soggetto. Studi precedentemente condotti hanno mirato ad indagare la coerenza tra questo nuovo strumento e quelli valutativi gi\ue0 in uso, al fine di evidenziarne eventuali punti di forza. Obiettivo: verificare l\u2019adeguatezza dell\u2019ICF come mezzo per creare un linguaggio comune tra differenti professionisti che interagiscono con il paziente, ricercando il livello di concordanza, mediante la somministrazione del questionario a sanitari, genitori ed insegnanti in una popolazione di minori con ritardo mentale. Materiali e Metodi: lo studio ha coinvolto 9 sanitari, Medici e professionisti dell\u2019area della riabilitazione, 40 genitori e 35 educatori che hanno compilato il questionario ICF-CY di 20 soggetti con ritardo mentale di et\ue0 compresa tra 3 e 11 anni seguiti presso un Servizio di NPIA per trattamenti o controlli periodici e iscritti in strutture formative del territorio. Per ciascun soggetto sono stati compilati 3 questionari ICF-CY e la compilazione \ue8 stata effettuata separatamente al fine di confrontare le risposte fornite. Analisi statistica: si \ue8 proceduto ad effettuare una comparazione dei punteggi assegnati a ciascuna voce dei questionari dello stesso bambino nelle quattro parti di cui l\u2019ICF si compone. Il confronto \ue8 stato effettuato tra tutti e tre i gruppi di valutatori (Kappa di Fleiss) nonch\ue9 a coppie: sanitari Vs genitori, genitori Vs insegnanti, sanitari Vs insegnanti (Kappa di Cohen). Risultati: si \ue8 riscontrata una diversit\ue0 nei risultati ottenuti dai due metodi di analisi utilizzati: il confronto tra i tre gruppi di esaminatori ha evidenziato una concordanza tra moderata e buona in tutte le parti del questionario; l\u2019analisi a coppie ha invece consentito di rilevare una concordanza moderata-buona nelle parti Funzioni corporee e Attivit\ue0 e partecipazione, un confronto impossibile nel 50% dei casi della parte Strutture Corporee, una discordanza nella parte Fattori ambientali per le coppie sanitari-insegnanti e genitori-insegnanti. Discussione: dai dati emersi, sembra che la discordanza rilevata nella parte Fattori Ambientali possa essere riferibile a carenza di linguaggio comune e deficit di comunicazione tra scuola e famiglia e tra professionisti e genitori; l\u2019incongruenza rilevata sulle Strutture Corporee \ue8 probabilmente legata alla tipologia del campione con disabilit\ue0 cognitiva e non funzionale, ma anche al dominio che per il suo contenuto si presta maggiormente ad essere compilato da sanitari. Conclusioni: l\u2019ICF si \ue8 dimostrato strumento adeguato per la rilevazione della differente percezione dello stato di salute e per il confronto tra differenti figure. Tuttavia, il ridotto campione a cui si fa riferimento non consente di trarre conclusioni definitive circa la significativit\ue0 dei livelli di concordanza rilevati e il reale accordo tra le differenti figure. Prospettive future di studio potrebbero dunque essere legate all\u2019incremento del campione oggetto di studio nonch\ue9 alla selezione di un campione con patologie differenti dal ritardo mentale. Abstract Introduction and background: ICF-CY is a comprehensive tool for holistic assessment of health that allows to investigate aspects of Functions and Body Structures, of Activities and Participation and of Environmental Factors involved in the health status of the subject. Previous studies about ICF had the purpose to investigate the consistency between this new instrument and assessment tools already in use, in order to highlight possible differences. Purpose: Verifying the effective usability of the ICF as tool for creating a common language between different figures that interact with the patient researching the level of correlation between the assessments made by sanitary staff, parents and teachers of children with mental retardation using ICF-CY check list. Materials and Methods: the study involved the use of the ICF-CY check list, 9 members of sanitary staff, including physicians and rehabilitators, 40 parents and 35 teachers filled in ICF-CY check list of 20 children with mental retardation, aged 3-11, followed by NPIA service for therapy or periodic controls, attending various educational institutions. For each subject of the sample were filled in three ICF-CY checklists and the compilation was carried out separately in order to compare the answers. Statistical Analysis: it was made by a comparison of the scores assigned to each item of the check lists of the same child. The comparison was made between all three groups of examiners (Kappa Fleiss) and in pairs: sanitary staff Vs parents, parents Vs teachers, sanitary staff Vs teachers (Cohen's Kappa). Results: there was a discrepancy in the results from the two methods of analysis used: the comparison between the three groups of examiners showed a correlation moderate-good in all parts of the check list; the analysis in pairs, allowed to observe the impossibility of calculate the correlation of scoring in Part 1.b (Body Structures) and a discordance in pairs sanitary staff-teacher and parent-teacher in Part 3 (Environmental Factors). Discussion: it seems that the discrepancy found in the Environmental Factors is attributable to a lack of communication between teachers and parents; the inconsistency detected on Body Structures is probably related to the reduced presence of malformations in the sample which did not allow to detect possible discrepancies. Conclusions: as documented in literature, the ICF is an appropriate tool for the detection of different perception of health status and the comparison of different opinions. However, the small sample of the study can't draw conclusions about the significance of the correlation levels detected and the real agreement between the different people. Prospects for the future study could be linked to the increase of the sample and the selection of a sample with different diseases

Seven years cognitive functioning and early assessment in extremely low birth weight children

Infants born preterm are at high risk for the onset of cognitive dysfunctions at school age. The aim of this study was to investigate the association between early neurodevelopmental assessment and the risk of adverse cognitive outcome in extremely low birth weight children. We enrolled all newborns (January 2002 - April 2007) consecutively admitted to our Institution, with a birthweight < 1000 g. Exclusion criteria were genetic abnormalities, severe neurofunctional impairment, and/or neurosensory disabilities. Ninety-nine children were assessed at 1 year of corrected age using the Griffiths Mental Development Scales Revised. The same children were re-assessed at school age through the Wechsler Intelligence Scale for Children. Children with impaired Griffiths General Quotient (i.e., < 1 SD) at 1 year of corrected age showed a significantly lower Full Scale Intelligence Quotient at 7 years of chronological age when compared to children who scored in the normal range at 1 year (p < 0.01). Considering the Griffiths Sub-quotients separately, a poor score in the Performance or in the Personal-Social Sub-quotients at 1 year was associated with significantly worse cognitive outcomes both in the Verbal and in the Performance Intelligence Quotients at 7 years (p < 0.01 and p < 0.05, respectively). A score < 1 SD in the Locomotor or in the Eye and Hand Coordination Sub-quotients were specifically associated with poorer Performance or Verbal Intelligence Quotients, respectively (p < 0.05). Our findings suggest that a poor score on the Griffiths Scales at 1 year is associated with a higher risk of cognitive impairment at school age. Larger confirmation studies are needed

Usefulness of an early neurofunctional assessment in predicting neurodevelopmental outcome in very low birthweight infants

OBJECTIVE: To evaluate whether early neurofunctional assessment may be useful in predicting neurodevelopmental outcome in children of very low birth weight (VLBW). DESIGN: Observational longitudinal study. SETTINGS: Northern Italy. PATIENTS: A total of 250 VLBW children (129 boys, 121 girls) born consecutively 1996-1999. MAIN OUTCOME MEASURES: Neurodevelopment at 36 months of chronological age, classified in accordance with the classification of Tardieu and the International classification of functioning. RESULTS: Of the infants exhibiting normal neurodevelopment (n = 183) or major dysfunction (n = 17) at 3 months of corrected age, 72% and 94% respectively did not change their score during the study. Minor dysfunctions at 3 months of corrected age were transient in 17 (34%) children. After adjustment for neonatal variables, neurodevelopment at 3 months of corrected age remained predictive of dysfunction at 36 months (odds ratio = 4.33, 95% confidence interval 2.05 to 9.12). If the results for the normal and minor dysfunction groups were pooled, the predictive qualities of the 3 month neurofunctional assessment were: sensitivity 0.5, specificity 0.99, positive predictive value 0.94, negative predictive value 0.93. CONCLUSION: Early neurofunctional evaluation may be useful in predicting later neurodevelopmental outcome in VLBW children

Le centrage des hanches au moyen de sig&#232;s moul&#233;s : &#201;tudes et r&#233;sultats

Background: Musculo-skeletal disorders and hip deformity play a key role on future development of motor and adaptive functions in children with cerebral palsy (CP). Lateral migration of the femoral head increases on average of 7.7% per year and may progress to hip dislocation. Conservative preservation of muscle length and balance may prevent or reduce femoral head migration and acetabular dysplasia. A prospective comparative non randomized study was conducted to determine the effect of a sige moul\ue9 postural management, in association with a physiotherapy program, on the progression of hip displacement in children with CP. Thirty-five patients with bilateral CP and so-called hip at risk (migration percentage [MP] of over 10% but less than 40%) were included into the study and evaluated by neurofunctional assessment, Gross Motor Function Classification System (GMFCS), Tardieu scale and radiological measurements (MP by Reimers). Eighteen children were treated with therapeutic education and postural management 4 hours a day, and 17 children (control group) were treated with NDT alone. Results: A significant difference was found between MP values of case group and control group after 1 year (T1) and 2 years of treatment (T2) (p = 0,001). The rate of hip displacement was reduced by 5 % in the treatment group after the first year and by 7 % at second follow-up. Conclusion: Our data show a progressive reduction of MP values measured in the treated group confirming the significant benefit from combined non-surgical approach. The study supports the evidence that conservative management of hip deformity can be successful if implemented before the development of hip dysplasia