Thesis

MEANINGFUL ACTIVITIES OF CHILDREN WITH MITOCHONDRIAL DISORDER 59 3 Table 1 Clinical characteristics of the children who participated in this study Gendera Ageb Level of cognitive developmentc Level of motor developmentd Ambulatione Level of speech abilityf Level of functional abilities in daily activitiesg Fatigue scoreh Interview techniques successful?i Global low functioning (N = 3) F S 1 2 1 4 2 71 Y M S 1 2 2 3 2 49 Y M S 1 3 1 1 1 NA N Low cognitive functioning and moderate-to-normal ambulation (N = 3) F A 2 3 5 5 4 NA Y M A 1 3 4 2 3 32 Y M S 1 3 5 3 2 49 N Global moderate functioning (N = 3) F S 3 3 4 6 3 72 Y M S 3 2 4 6 3 66 Y M S 3 4 4 6 3 38 Y Total (N = 9) a: M = male; F = Female; b: S: school age (4-12 years), A: adolescent age (13-18 years); c: based on age-related norm-referenced test—1: extremely low, 2: low, 3: average, 4: good; d: based on age-related norm-referenced test—1: spasticity, 2: ataxia, 3: extremely delayed, 4: delayed, 5: normal development; e: based on Hoffer scale—1: non-ambulation, 2: non-functional ambulation, 3: household ambulation, 4: community ambulation, 5: normal ambulation; f: based on Radboud dysarthria assessment—1: no oral communication possible, 2: communication with a known person, 3: frequent repetitions, 4: incidental repetitions, 5: effective despite small problems, 6: effective communication; g: based on Pediatric Evaluation of Disability Inventory (PEDI)—1: not self-independent, 2: minimal self-independent, 3: sufficient self-independent, 4: fully self-independent; h: measured with the Pediatric Quality of Life Inventory Multidimensional Fatigue Scale (PedsQL-MFS); the higher the score, the better the (by fatigue impacted) health-related quality of life; NA: not addressed; i—Y: yes, interview successful in gaining child’s perspective, N: interview not successful in gaining the child’s perspective.

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