CHAPTER 2 48 Conclusions This exploratory pilot retrospective chart review gives insight into the everyday activities performed by children with mitochondrial disorders as reported by professionals. Nine activity categories were identified that represent regular childhood activities. We found that, although the children varied in capacities and limitations, all activity categories were present in each global functioning profile. There are indications that children perform activities differently in terms of level of independence, assistive device usage, and energy costs. This study provides a foundation for a qualitative study on the activities of children with a mitochondrial disorder and whether allied health care professionals support their practice. Furthermore, it supports the need for personalized and strength-based care, which puts emphasis on involving the children’s perspective in care. Conflicts of Interest The authors report no conflicts of interest. Acknowledgements We thank the professionals in the Mitoroute at the Radboudumc, Nijmegen, Netherlands, namely, (i) Kim van de Loo, MSc, and dr. José Clusters, psychologists; (ii) Marjo van Gerven, speech therapist; (iii) Dr. Anjo Janssen, pediatric physical therapist; and (iv) Yvonne Veenhuizen, Msc, and Anita van der Molen, occupational therapists. The authors used their data to categorize the children into the three profiles: global low functioning, low cognitive functioning with a moderate to normal ambulation, global moderate functioning. For the ability to study all patient records we would like to thank Prof. Dr. J.A.M. Smeitink, head of the Radboud Centre for Mitochondrial Medicine. The authors also thank him for his critical review of the manuscript and the suggested improvements.
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