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L'approccio alle cure centrato sulla famiglia è ormai riconosciuto come il modello di buona prassi nei Servizi dedicati ai bambini con disabilità e alle loro famiglie. Lo scopo di questo studio è quello di valutare la percezione della qualità delle cure, sia da parte delle famiglie che dei professionisti e la reale applicazione del concetto di FCC in una rete italiana di 17 servizi di riabilitazione e di esaminare la relazione tra caratteristiche del bambino, della famiglia, dei professionisti, dell'organizzazione dei servizi e il grado di soddisfazione per le cure ricevute.

Facchin P, Rosa-Rizzotto M, Turconi AC, Pagliano E, Fazzi E, Stortini M, Fedrizzi E, The Gipci Studi Group: Multisite trial on efficacy of constraint-induced movement therapy in children with hemiplegia: study design and methodology. Am J Phys Med Rehabil 2009;88:216-230. Objective: In the past decades, several treatment approaches have been used to improve upper limb function in hemiplegic cerebral palsy. Only recently has constraint-induced movement therapy emerged as a treatment approach for children with hemiplegic cerebral palsy with the aim of reversing the behavioral suppression of movement in the affected upper limb. To date, evidence on this treatment has been very poor and limited, because all currently available trials reveal methodological limitations and a need for additional research to support the application of this treatment technique. This article presents the methodological choices, design, and main characteristics of an ongoing controlled clinical trial on the effectiveness and safety of constraint-induced movement therapy combined with an intensive rehabilitation program and compared with two comparison groups: one treated with an intensive rehabilitation program and the other with standard treatment. Methods: Twenty-one rehabilitation sites are currently recruiting patients with hemiplegic cerebral palsy, aged between 2 and 8 yrs, who have never undergone constraint therapy. Primary outcome measures include two major domains: upper limb motor ability (Quality of Upper Extremity Skills Test) and hand function assessment evaluating both grip function and spontaneous use of the affected side (Besta scale). Secondary outcome measures concern overall function, behavior, compliance, and satisfaction with treatment program of both child and family. Patients' follow-up is of 1 2 mos after treatment. Results: Research in children has always been neglected in comparison with adults, because of ethical reasons regarding the use of children for experimental purposes. The consequence has been the utilization of treatment and assessment tools and techniques that have not always been tested in pediatric patients or evidence is very scarce. Conclusion: Discussing and working on pediatric research methods represents an urgent need in rehabilitation research.

A new proof of a pathwise uniqueness result of Krylov and Röckner is given. It concerns SDEs with drift having only certain integrability properties. In spite of the poor regularity of the drift, pathwise continuous dependence on initial conditions may be obtained, by means of this new proof. The proof is formulated in such a way to show that the only major tool is a good regularity theory for the heat equation forced by a function with the same regularity of the drift.

Hereditary methemoglobinemia with generalized deficiency of NADH-cytochrome b5 reductase (b5R) (type II) is a rare disease characterized by severe developmental abnormalities, which often lead to premature death. Although the molecular relationship between the symptoms of this condition and the enzyme deficit are not understood, it is thought that an important cause is the loss of the lipid metabolizing activities of the endoplasmic reticulum-located reductase. However, the functions of the form located on outer mitochondrial membranes have not been considered previously. In this study, we have analyzed the gene of an Italian patient and identified a novel G-->T transversion at the splice-acceptor site of the 9th exon, which results in the complete absence of immunologically detectable b5R in blood cells and skin fibroblasts. In cultured fibroblasts of the patient, NADH-dependent cytochrome c reductase, ferricyanide reductase, and semidehydroascorbate reductase activities were severely reduced. The latter activity is known to be due to b5R located on outer mitochondrial membranes. Thus, our results demonstrate that the reductase in its two membrane locations, endoplasmic reticulum and outer mitochondrial membranes, is the product of the same gene and suggest that a defect in ascorbate regeneration may contribute to the phenotype of hereditary methemoglobinemia of the generalized type.

In hemiplegic children, the recognition of the activity limitation pattern and the possibility of grading its severity are relevant for clinicians while planning interventions, monitoring results, predicting outcomes.Aim of the study is to examine the reliability and validity of Besta Scale, an instrument used to measure in hemiplegic children from 18 months to 12 years of age both grasp on request (capacity) and spontaneous use of upper limb (performance) in bimanual play activities and in ADL.Psychometric analysis of reliability and of validity of the Besta scale was performed.Outpatient study sampleReliability study: A sample of 39 patients was enrolled. The administration of Besta scale was video-recorded in a standardized manner. All videos were scored by 20 independent raters on subsequent viewing. 3 raters randomly selected from the 20-raters group rescored the same video two years later for intra-rater reliability. Intra and inter-rater reliability were calculated using Intraclass Correlation Coefficient (ICC) and Kendall's coefficient (K), respectively. Internal consistency reliability was assessed using Alpha's Chronbach coefficient. Validity study: a sample of 105 children was assessed 5 times (at t0 and 2, 3, 6 and 12 months later) by 20 independent raters. Each patient underwent at the same time to QUEST and Besta scale administration and assessment. Criterion validity was calculated using rho-Pearson coefficient.Reliability study: The inter-rater reliability calculated with Kendall's coefficient resulted moderate K=0.47. The intra-rater (or test-retest) reliability for 3 raters was excellent (ICC=0.927). The Cronbach's alpha for internal consistency was 0.972. Validity study: Besta scale showed a good criterion validity compared to QUEST increasing by age and severity of impairment. Rho Pearson's correlation coefficient r was 0.81 (P0.0001). Limitations. Besta scales in infants finds hard to distinguish between mild to moderately impaired hand function.Besta scale scoring system is a valid and reliable tool, utilizable in a clinical setting to monitor evolution of unimanual and bimanual manipulation and to distinguish hand's capacity from performance.

In the last decades, the world of rehabilitation has been more and more calling for clear evidence to support intervention and numerous research programs have been developed. At stake, relatively little research on opinions and attitude of rehabilitation personnel involved in research conducted in real clinical settings has been carried out.To explore the opinion of professionals involved in a national clinical trial on research.Multicentre cross-sectional study.19 rehabilitation centres/services (4 research institutes, 15 local rehabilitation services).All professional participating to a multi-centre clinical trial on the effects of Constraint Induced Movement Therapy on children with hemiplegic cerebral palsy.A 15-questions questionnaire inquiring feasibility, usefulness, products, costs, judgement and perceptions about clinical research in rehabilitation was administered.Among those working in one of the 19 rehabilitation centres part of the multicentric study, 76 professionals were asked to fill in the questionnaire. 68 professionals answered (89.4% of response rate). More than 75% of the sample thinks that its rehabilitation centre is suited to develop clinical research. Research results useful for the development of their daily activities (new tools for the assessment of children, to demonstrate the efficacy of a new treatment option and to learn a new way of working, and to strengthen the ties within the working team). Research is costly in terms of personal time and effort, but it can modify the rehabilitation praxis (assessment tools, the relationship with colleagues/patients). 98% of the interviewees declared the willingness to participate to other research projects.This survey highlights the importance of conducting research in local rehabilitation services, not only in terms of generation of new evidences, but also in terms of building networks, sharing experiences and knowledge, connecting with centers of excellence and providing a specific training for research conduction.

Background: Family-centred care (FCC) is recognized as the model of best practice for the provision of services for children who have physical disabilities and their families. Objective: To assess the overall perception of FCC provided in an Italian network of 17 rehabilitation services, as perceived by parents of children with cerebral palsy and professionals, and to explore whether children, families, service providers and service-related characteristics influence parent satisfaction regarding service provision in an FCC practice. Methods: The Measure of Processes of Care (MPOC-20) for parents/caregivers and the Measure of Processes of Care for Service Providers (MPOC-SP) for healthcare providers were used. For the purposes of the study, an ad hoc information form was developed to collect information concerning children, families, service providers and services. Results: A total of 382 parents/caregivers and 269 healthcare providers completed the MPOC questionnaires. Parents and service providers both identified the domains for enabling partnerships and interpersonal sensitivity as a strength, while the domain relating to general information was always scored the lowest. An advanced maternal age, being a single parent, being unemployed and having lower socio-economic status were factors identified as individually predictive of lower FCC scores on the MPOC-20. Higher intensity treatment, inpatient services, primary healthcare settings and settings identified with limited financial resources and reduced space/time for each family were other variables significantly associated with less favourable MPOC-20 ratings. Conclusions: The perception of FCC provided was fairly positive, with some areas of improvement, such as the domain of provision of information. Professionals should, therefore, provide better communication and take more time in giving information and attention to parents. Potential sources of variation in parent perceptions of FCC based on family characteristics and the organization of services highlight the importance the need to support services through the provision of greater financial and human resources.

We prove the existence of a stochastic flow of Hölder homeomorphisms for solutions of SDEs with singular time dependent drift having only certain integrability properties. We also show that the solution map x → X x is differentiable in a weak sense.

La nostra riflessione intende esplorare le vicende emotive, la percezione del Sé, il costituirsi delle relazioni, negli adolescenti affetti da paralisi cerebrale. Una breve introduzione delinea le caratteristiche di questa tappa evolutiva, passaggio dall’infanzia all’età adulta, attraverso il contributo della letteratura generale e specifica. Successivamente vengono presentati e discussi i risultati di una nostra ricerca condotta su un gruppo di adolescenti affetti da paralisi cerebrale di età compresa fra i 14 e i 16 anni e 11 mesi, confrontati con un gruppo di controllo. Obiettivo del lavoro è continuare e approfondire il dibattito su questi temi e stimolare in tutti gli operatori coinvolti nel progetto riabilitativo di un soggetto con paralisi cerebrale il desiderio di includere da subito nel loro lavoro la dimensione emozionale e relazionale. È importante ricordare che “il corpo è la casa del Sé” e bisogna tener conto della persona nella sua globalità per prevenire o ridurre sofferenze psichiche e disturbi psicopatologici secondari

International audience; A stochastic linear transport equation with multiplicative noise is considered and the question of no-blow-up is investigated. The drift is assumed only integrable to a certain power. Opposite to the deterministic case where smooth initial conditions may develop discontinuities, we prove that a certain Sobolev degree of regularity is maintained, which implies Hölder continuity of solutions. The proof is based on a careful analysis of the associated stochastic flow of characteristics.