Sonja Mensch

70 Chapter 3 APPENDIX A Procedure The expert group formulated criteria for clinical suitability, based on their technical knowledge as well their practical experience with current instruments for the evaluation of motor abilities. In a first focus groupmeeting, each expert individually listed a series of requirements. This list of identified criteria was discussed and a clear definition of each criterion was drafted. In a second meeting, the criteria were ranked according to their perceived relevance and a final, limited set of criteria was agreed upon by consensus of the whole group. Criteria for clinical suitability The expert group formulated the following suitability requirements: 1) Low Level of motor abilities (GMFCS V). Motor functioning of children with SMD is very low, meaning these children are often unable to change body position, to take up and maintain an upright body position and moving around such as turning around, rolling and crawling. As a result, these children often stay in a supine position or sit in a fully supported wheelchair in daily living. Examples of motor abilities of a low level are for example raising the head, reaching with the arms, maintaining a sitting position or roll over. Motor abilities of a high level such as walking, running, jumping, catching, swimming and also tinkering, scissoring or washing are too complex for these children. Therefore an instrument for these children is suitable if the motor abilities are of a low level and not too difficult or complex. Motor abilities in lying or upright body positions will be an essential part of the test. 2) The grading or scoring should be sensitive to subtle changes in motor abilities. Due to the low level of motor abilities in children with SMD, in many instruments steps between changes in motor abilities are too large. Test items focused on changes in motor abilities are often related to the normal development such as the development from lying to standing in which intermediary steps are rolling over, sitting, crawling and running. Children with SMD often show subtle but relevant changes in motor abilities related to their care, eating or playing. Therefore an instrument is needed in which subtle changes have to be captured by small intermediary steps, which are relevant for these children. An example is the motor ability‘rolling over’. The desired result is coming from lying on the back to supine lying. In children with SMD a step in between can be rolling over into lying on the side or the child’s cooperation during changing position in contrast to being passive.