Sonja Mensch

137 General discussion Recommendations Good quality research investigating the measurement properties, and in particular the responsiveness and interpretability of performance-basedmeasures, is needed (Dobson et al., 2012). Responsiveness is an important measurement property when used to evaluate patients over time (Mokkink et al., 2010). We recommend a study aiming to evaluate the responsiveness of Movakic related to the impact of events and to establish reasonable estimates of relevant changes in motor abilities in order to provide practical guidelines how to interpret changes in Movakic scores. Specifically in this target group the effects of physiotherapeutic or other interventions onmotor abilities are often unknown. Movakic can be used in intervention studies that aim to establish the effect of interventions such as specific medication or surgery on motor abilities in children or persons with SMD. We know children with SMD are a small but significant subgroup of persons with intellectual disabilities (Health Care Inspectorate [Inspectie voor de gezondheidszorg (IGZ)]., 2000). In order to increase evidentiary power we recommend performing studies by adding adults in addition to children with SDM to the study population. Based on the findings from the first evaluation of applicability (Mensch et al., 2015a), Movakic is a feasible instrument for adults too. In summary, we recommend Movakic in clinical practice of physiotherapists working with persons with SMD. Despite some methodological issues caused by the complexity of objective evaluation in this group, the results of this thesis are that Movakic has adequate feasibility, reliability, validity and responsiveness (Mensch et al., 2015a) (Mensch, Rameckers, Echteld & Evenhuis., 2015b) (Mensch, Echteld, Evenhuis, Rameckers., 2016). To use Movakic one needs to be trained and build experience in using Movakic. Practicing with individual cases is very important during training of Movakic. We plan to work with experts form care-organizations around the country to ensure this online instrument is kept available and remains up-to-date. Personal note about this special group In addition to the main subject of this thesis I also feel responsible to raise my concerns related to this vulnerable group of children. One of my concerns is the discrepancy in our care system. The lack of sufficient, objective, relevant and scientific evidence, specifically related to this multiple disabled group, leads to an incomplete analysis on the effectiveness of intervention. As a result there is an underestimation of the real needs and support required to help children develop and maximize their quality of life. These children are probably not receiving enough care. In addition, the lack of information and thus evidence might cause health insurance companies to reduce funding and cut budgets intended to be used in the execution of The Social Support Act (WMO).