DAILY ACTIVITIES OF CHILDREN WITH MITOCHONDRIAL DISORDER 39 2 Functional capacities were stratified as following: Cognitive development (based on the age-related norm referenced test used for each child): 1: extremely low cognitive functioning, 2: low cognitive functioning, 3: average cognitive functioning and 4: good cognitive functioning; Ambulation (Hoffer scale [22], with the normal ambulation level added by Schoenmakers et al. [23]) 1: non-ambulation, 2: non-functional ambulation, 3: household ambulation, 4: community ambulation, 5: normal ambulation; and Speech abilities (Radboud Dysarthria Assessment [24]): 1: no oral communication possible, 2: communication with a known person, 3: frequent repetitions (frequently repeating themselves to be guarantee that they will be understood), 4: incidental repetitions, 5: effective despite small problems, 6: effective communication. Other patient characteristics collected included gender, age, gross motor development (based on norm referenced tests), performance in daily activities (based on Pediatric Evaluation of Disabilities Inventory [PEDI] [25]) and fatigue (measured with Pediatric Quality of Life Inventory – Multidimensional Fatigue Scale [PedsQL-MFS] [26]). These characteristics were not used in defining the profiles, but were used as descriptive outcomes linked to each profile. Profiles based on functional capacities Three profiles could be defined based on the functional capacities of the children: Global low functioning: children with an extremely low or low cognitive developmental level, limited in their motor functioning which lead to non-functional outdoors ambulation and non-functional communication. Low cognitive functioning with a moderate to normal ambulation: children with extremely low or low cognitive developmental level, some limitations in motor functioning but able to have functional ambulation. Speech abilities in this profile differ among the children. Global moderate functioning: children with average cognitive developmental level, some limitations in motor functioning but able to have functional ambulation. Speech abilities are sufficient to make themselves understandable. Data analysis In this exploratory study, the method of directed content analysis [18] was used on the text fragments extracted from the patient records [27-29]. The text fragments were focused on information reported by the health care professionals regarding the experiences of children and parents in their daily life situations. Before starting the analysis of the patient records, two preliminary steps were conducted: 1. Identify the key concept ‘activity’ as initial coding category; 2. Operationalize the concept ‘activity’ using theory.
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