Everyday Activities for Children with Mitochondrial Disorder: A Retrospective Chart Review.
Marieke Lindenschot, Imelda J M de Groot, Saskia Koene and 3 others
PMID 29977174WHAT IT FOUND
Children with mitochondrial disorders across all functioning levels engaged in the same nine activity categories, from self-care to leisure.
The difference was not what they did, but how: varying levels of assistance, adaptive devices, and energy management were required for participation.
Key findings
01All nine activity categories were present in each global-functioning profile, showing that children with severe limitations still engaged in productivity and leisure activities.
02Participation differed by the level of support required, such as eating independently versus with help or an eating device, rather than by the type of activity.
03Energy level was frequently noted as the deciding factor for whether a child performed or avoided an activity across all domains.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The study relied on unprompted clinical notes, meaning information was inconsistent and not every professional reported the same details. The sample size was very small (17 children), and the number of participants in each functional profile was even smaller. Data was drawn from a specific multidisciplinary screening program, which may introduce selection bias if only certain families participate. The records did not capture the child's own perspective on the meaning of their activities, relying solely on professional observations. It was not always clear if activities noted during therapy sessions translated to meaningful daily life participation.
Declared interests
The authors declared no conflicts of interest. The study was conducted at Radboud University Medical Center, and ethical approval was obtained for the use of anonymous patient data.
The easy way to misread this
Do not interpret the presence of activity categories in all profiles as evidence that these children are performing activities with the same independence or energy cost as their peers. The study highlights that while the types of activities are similar, the support required varies significantly, and this paper does not test whether specific interventions improve participation.