PRPP-ASSESSMENT TO MEASURE CHANGE 203 8 Ethical considerations All procedures performed in this study were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards 55. The ethical board of the regional research committee provided their approval (Approval Number 2021-8111). All parents signed informed consent and all raters signed a confidentially agreement. Where indicated, the children also signed the informed consent to recognize their volition/agency56. Results The patient information letter was sent to 17 eligible children and their parents. Eleven children refused participation in the study, of which eight declined because of situations that were too constrained (due to COVID-19, family issues or hospital admittance), one child did not want to improve his activities and for two children the reason was unknown. Six children were willing to participate and met the inclusion criteria but two dropped out before the start of the intervention and one during the intervention period because they could not manage to schedule appointments in their busy lives. Thus, four children started the intervention but the post-intervention measurement was conducted on only three of the children. Age, gender, functional capacities and the underlying etiology varied. For privacy reasons, the exact age of the children and the genetic etiology of the disease are not mentioned in the description of the cases, as this could threaten the anonymity of participants. A list of underlying etiology can be provided upon reasonable request with the corresponding author. Here, we will first describe each case, followed by the overall outcome. Description of cases Xandra Xandra is a girl of school age who was transferred recently to special education. She is delayed in motor and cognitive development, is able to walk in and around the house and is sufficiently self-dependent considering her young age. Despite minor speech problems, she is effective in communication. Due to Xandra’s young age, her mother chose the three activities: dressing (taking clothes off and putting on pajamas before going to bed), cycling (getting on/off a bicycle, cycling, steering and braking) and social play (playing with friends in non-verbal interaction). Xandra was not able to score the child-rated COPM. Her mother videotaped each activity once in the waiting period. Mother and child were
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