DAILY ACTIVITIES OF CHILDREN WITH MITOCHONDRIAL DISORDER 47 2 a relationship to the activities that the children performed and experienced as meaningful in the daily life situation. For example: “The child found the pencils and immediately started coloring”. This note about a test situation in one of the patient records can imply that the child likes to color, but this is disputable. Outcomes of test situations cannot be seen as representative of the child’s daily life [42]. In this research, we focused on activity performance, which describes what a person actually does in daily life, expressing the individual’s involvement in a life situation [43]. Interviewing the children themselves would provide knowledge about their self-reported activity performance and experience in daily life. Another limitation of the study is the small sample size and stratification of the sample into three global functioning profiles. However, the sample size overall is suitable for an exploratory study taking into account the low prevalence of the disease. In each profile there were even smaller numbers of participants; however this was necessary to address the difference in functioning levels of the children. Prediction of the activity profile based on level of impairments in this population is difficult given the unpredictable nature of the condition. Nonetheless, our study showed a large diversity of functional capacities, which indicates that we covered the broad spectrum of impairments and limitations seen in this population [44]. Stratification into the functional capacity profiles enhanced the insight into activity categories of the total study population and each profile separately. Conversely, a selection bias might have occurred because solely reports of children within the specific MitoRoute were included. Pediatricians refer all children with mitochondrial disorder to be screened at the MitoRoute for different reasons (e.g., new diagnosis, two-yearly screening or a deterioration in the clinical condition). Although not all parents and/or children with mitochondrial disorder agree to participate in the MitoRoute, it is not sure whether and how this will lead to selection bias. Despite this, we think that the findings may provide an overview of activity categories for possibly all children with mitochondrial disorders. Future research should include a representative sample, on all characteristics, of children with mitochondrial disorders. The clinical implications of the large variation of reported activities found in this study could be that health care professionals need to consider all nine activity categories in their assessment and therapy. In addition, clinicians should consult children on the meaning they attach to an activity to decide on activity category to which it belongs. Furthermore, assessments and interventions should be tailored enough to encompass the diversity in activities performed as seen in the global functional capacities profiles of the children and the individual preferences in performance of activities.
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