Long-term social participation following pediatric ABI design of a Dutch multi-centered study S.Rosema, A. de Kloet, F. van Markus, C. Stut, S. Lambregts,

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Long-term social participation following pediatric ABI design of a Dutch multi-centered study S.Rosema, A. de Kloet, F. van Markus, C. Stut, S. Lambregts, P. de Koning, J. Meesters, R. Burgers, & T. Vliet-Vlieland Objective. A systematic review (n=8) showed that a majority (25-80%) of children and youth with ABI were restricted in at least 1 participation domain (at home, school/work, in society), while problems hardly decreased over time 1. Many studies highlighted the reciprocal relationship between outcome of pediatric ABI and family functioning. However, participation and family impact studies showed a great variety in, i.e., type, severity and time since onset of injury, age range, number of measurements and outcome measures. Consequently results can hardly be compared or accumulated, necessary to decrease the current knowledge gap and enabling evaluation of rehabilitation programs with respect to participation outcome and family functioning. Method. A multicenter, prospective, observational study including 13 rehabilitation centers in the Netherlands. Checklists and questionnaires are used to collect information. Primary outcomes are participation (Child and Adolescent Scale of Participation; CASP & CASP-Y) and family functioning (Paediatric Quality of Life Inventory Family Impact Module; PedsQL TM FIM). Secondary outcomes are health care consumption, needs and satisfaction (Child and Family Follow-up Survey; CFFS, part 1, 4, and 5; patient file), quality of life of the child and family (PedsQL Health Related Quality of Life; PedsQL TM HRQoL) and fatigue (PedsQL TM fatigue), Pediatric Stroke Outcome Measure-Short Neuro-Exam©-NL versie (PSOM-SNE-NL). Injury and rehabilitation treatment characteristics are collected from the patient files by the researcher. The process is presented below: Objective. A systematic review (n=8) showed that a majority (25-80%) of children and youth with ABI were restricted in at least 1 participation domain (at home, school/work, in society), while problems hardly decreased over time 1. Many studies highlighted the reciprocal relationship between outcome of pediatric ABI and family functioning. However, participation and family impact studies showed a great variety in, i.e., type, severity and time since onset of injury, age range, number of measurements and outcome measures. Consequently results can hardly be compared or accumulated, necessary to decrease the current knowledge gap and enabling evaluation of rehabilitation programs with respect to participation outcome and family functioning. Method. A multicenter, prospective, observational study including 13 rehabilitation centers in the Netherlands. Checklists and questionnaires are used to collect information. Primary outcomes are participation (Child and Adolescent Scale of Participation; CASP & CASP-Y) and family functioning (Paediatric Quality of Life Inventory Family Impact Module; PedsQL TM FIM). Secondary outcomes are health care consumption, needs and satisfaction (Child and Family Follow-up Survey; CFFS, part 1, 4, and 5; patient file), quality of life of the child and family (PedsQL Health Related Quality of Life; PedsQL TM HRQoL) and fatigue (PedsQL TM fatigue), Pediatric Stroke Outcome Measure-Short Neuro-Exam©-NL versie (PSOM-SNE-NL). Injury and rehabilitation treatment characteristics are collected from the patient files by the researcher. The process is presented below: Results. A medical ethical committee granted an exemption of assessment. Fifteen rehabilitation centers in the Netherlands were invited to participate of which 13 agreed to participate. 9 centers have started recruiting: Sophia Revalidatie Center, Revant, Heliomare,, Revalidatie Friesland, Libra Revalidatie & Audiologie, Vogellanden, De Hoogstraat, Groot Klimmendaal and Rijnland Revalidatie Centrum. The other 4 will follow : de Trappenberg, Reade, Maartenskliniek and Roessingh. Since November 2015, seven families have been recruited. Conclusion. A protocol to conduct the first, large multicenter study investigating consequences of ABI regarding participation and family functioning was developed and approved. Subsequently, the study started October References 1 de Kloet, A.J, Gijzen, R., Braga, L.W., Meesters, J.J., Schoones, J.W., & Vlie Vlieland T.P. (2015). Determinants of participation of youth with acquired brain injury: A systematic review. Brain Injury, Epub ahead of print. Standard care (child/adolescent/young adult, parent, significant other) Primary outcomes: CASP & CASP-Y, PedsQL TM FIM. Secondary outcomes: CFFS, PedsQL TM HRQoL, PedsQL TM Fatigue, PSOM-SNE Recruiting 150 children/adolescents and families Inclusion: 4-25 years & ABI diagnoses Exclusion: physical, neurological or psychiatric consequences affecting study participation 12 month follow up (child/adolescent/young adult, parent, significant other) Primary outcomes: CASP & CASP-Y, PedsQL TM FIM. Secondary outcomes: CFFS, PedsQL TM HRQoL, PedsQL TM Fatigue, PSOM-SNE 24 month follow up (child/adolescent/young adult, parent, significant other) Primary outcomes: CASP & CASP-Y, PedsQL TM FIM. Secondary outcomes: CFFS, PedsQL TM HRQoL, PedsQL TM Fatigue, PSOM injury & rehabilitation treatment characteristics Therefore the aim of this study is to prospectively describe the course of participation and impact on family in a large cohort of children and adolescents who are referred for ABI at a rehabilitation center in the Netherlands, using recommended outcome measures during a period of 2 years.