CHAPTER 7 184 Although a limitation of this study was the relatively small sample of 13 children with a total of 65 activities, it is the first study examining reliability and validity of the PRPP-Assessment in the complex target group of children with mitochondrial disorder. Reliability and validity statistics are satisfying, and most parents stated that they recognized their child in the PRPP-report. In previous studies [19], parents also expressed that the PRPP-Assessment was valuable for the care of their child. Unfortunately, in this study the COPM data couldn’t be collected from all children themselves. Due to the communication difficulties experienced by the children, in-person data collection was necessary. The COVID-19 restrictions, which were introduced during data-collection, inhibited in-person contact, which led to very few child perspectives in this research. Therefore, a recommendation for future research is to evaluate the clinical relevance of the PRPP-Assessment from the child’s perspective. In addition, to make the PRPP-Assessment applicable to monitor the course of the disease, and the impact on everyday functioning, more research focusing on the ability to detect clinically relevant change and overall responsiveness is necessary. In addition, when applying the PRPP assessment to these complex target groups, where setting a personalized criterion is needed, it is important to select tasks that fit with the abilities of the child and are challenging at the same time. The current study adds to the knowledge on psychometric properties and provides encouraging evidence for the reliability and validity of the PRPP-Assessment to assess each individual child within the heterogenic group of children with a mitochondrial disorder with a personally-relevant occupational focus. Acknowledgements We would like to thank all children, parents and OTs that participated in this study. In memoriam Dr. Esther Steultjens contributed extensively during this research, but was no longer with us finishing this article. Her input during the research was extremely valuable. Data availability statement The data that support the findings of this study are available from the corresponding author upon reasonable request.
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