CHAPTER 2 38 are reported in patient records by health care professionals and understanding the profile of activities these children participate in. Methods A retrospective chart review [16,17] was performed. A directed content analysis [18] was used to explore which everyday activities were reported in patient records and to explore if they differed among the functional profiles of the children. Participants The participants of this study were children (0–18 years) with a genetically confirmed mitochondrial disorder whowere periodically evaluated in the so-called “MitoRoute”, a multidisciplinary, medical and allied health care screening program at the Radboud Center for Mitochondrial Medicine (RCMM) at the Radboud University Medical Center (Radboudumc), Nijmegen. During MitoRoute, the children were evaluated by a team consisting of several physicians of different disciplines and allied health professionals, including a physical therapist, occupational therapist, speech therapist, dietitian, social worker and psychologist. The goal of this screening program was to establish a detailed overview of the consequences of the disorder for the child on different dimensions of the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) [19], to prevent and detect possible complications and formulate treatment advice. The patient records of all children with a genetically proven mitochondrial disorder who were screened from May 2015 until May 2016 in the Radboudumc were included in this study. Data collection Qualitative data concerning activities of children with mitochondrial disorders were extracted from clinical notes of (allied) health care professionals (MitoRoute) in the electronic patient records. The patient records contained unprompted written information relevant to the assessment and conversations performed by (allied) health care professionals, as they were not asked to collect data specific to this study. Stratification As motor function, cognitive abilities and communication influence participation in activities [20,21], these characteristics were used to construct functional capacities profiles of the children. To ensure the quality of the stratification into the profiles, a log was kept documenting thought processes and tracked decision-making. Member checking with health care professionals was used to verify the profiles.
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