Sonja Mensch

15 General introduction and outline of the thesis In our setting we commonly use the Gross Motor Function Measure (GMFM) (Russell et al., 1989) (Russell, Rosenbaum, Avery & Lane., 2002) (Ketelaar et al., 1999). Although this instrument has been specially developed for children with cerebral palsy in mind, it has been evaluated in children with Down Syndrome (Russell et al., 1998). However, clinical experience has shown us the limitations of this instrument in children with SMD such as the use of items that describe motor functions that are not relevant in severely disabled children and the lack of sensitivity in scoring subtle, gradual changes in motor function. In addition, the study of Russell et al confirms our clinical experience; children with Down Syndrome who were younger and had mild motor impairment changed significantly more than those who were older and had moderate or severe motor impairment. In general, also internationally, in the last decade there has been a growing wish in the field of physiotherapy, to objectify changes in motor abilities in clinical practice in order to support decision-making in (expensive) interventions offered to this group (Tieman, Palisano, & Sutlive, 2005) (American Physical Therapy Association., 2016). Therefore, in 2005, I started thinking about a measurement instrument for motor abilities of children with SMD. I was encouraged by the support of my colleague physiotherapists as well as the management in care organisation Ipse de Bruggen to develop such an instrument. The research project on its design and evaluation was performed at the Erasmus MC. CONTENTS OF THIS THESIS The aim of my thesis was to contribute to the physiotherapeutic care of children with SMD by developing a feasible and validated instrument that evaluates motor abilities in these severely disabled children. Before starting with the development of a new instrument we had to be sure that there was no other instrument available. Therefore, this thesis starts with a systematic review of the scientific literature, aimed at the identification of existing measurement instruments for motor abilities in children with disabilities in general (chapter 2). From this search we found eight instruments, developed for children with disabilities. In chapter 3 we started with an evaluation of applicability of these instruments for children with SMD, we described the step-by-step designing process of a new instrument and we ended this chapter with the presentation of its first draft, as well its name: Movakic ( mo tor e va luation in k ids with i ntellectual and c omplex disabilities).