Thesis

CHAPTER 7 190 References 1. Gorman GS, Schaefer AM, Ng Y, et al. Prevalence of nuclear and mitochondrial DNA mutations related to adult mitochondrial disease. Annals of Neurology. 2015;77(5):753-759. 2. Koopman WJ, Beyrath J, Fung CW, et al. Mitochondrial disorders in children: toward development of small-molecule treatment strategies. EMBO molecular medicine. 2016 Apr 01;8(4):311-327. doi: 10.15252/emmm.201506131 [doi]. PubMed PMID: 26951622; PubMed Central PMCID: PMCPMC4818752. 3. Dassler A, Allen PJ. Mitochondrial disease in children and adolescents. Pediatric nursing. 2014;40(3):150. 4. Kisler JE, Whittaker RG, McFarland R. Mitochondrial diseases in childhood: a clinical approach to investigation and management. Developmental Medicine & Child Neurology. 2010 May;52(5):422-33. doi: 10.1111/j.1469-8749.2009.03605.x. PubMed PMID: 20163433. 5. Koene S, Smeitink J. Mitochondrial medicine: entering the era of treatment. Journal of internal medicine. 2009 Feb;265(2):193-209. doi: 10.1111/j.1365-2796.2008.02058.x. PubMed PMID: 19192036. 6. Koene S, Wortmann SB, de Vries MC, et al. Developing outcome measures for pediatric mitochondrial disorders: which complaints and limitations are most burdensome to patients and their parents? Mitochondrion. 2013 Jan;13(1):15-24. doi: 10.1016/j.mito.2012.11.002. PubMed PMID: 23164801. 7. Coyne I, Hallstrom I, Soderback M. Reframing the focus from a family-centred to a child-centred care approach for children’s healthcare. Journal of child health care : for professionals working with children in thehospital andcommunity. 2016May01;20(4):494-502. doi:http://dx.doi.org/10.1177/1367493516642744. PubMed PMID: 27141084. 8. Lindenschot M, Steultjens EMJ, Zajec J, et al. The Perspectives and Values of Children with a Mitochondrial Disorder with Regard to Everyday Activities. Journal of Developmental and Physical Disabilities. 2020 2020/06/01;32(3):509-534. doi: 10.1007/s10882-019-09699-9. 9. Anastasi A. Psychological testing. New York: MacMillan Publishing Co.; 1988. p. 102. 10. Keller J, Kafkes A, Kielhofner G. Psychometric Characteristics of the ChildOccupational Self Assessment (COSA), part one: an initial examination of psychometric properties. Scandinavian journal of occupational therapy. 2005;12(3):118-127. 11. Linton S. 6. Disability studies/not disability studies. Claiming Disability: New York University Press; 1998. p. 132-156. 12. McLaren C, Rodger S. Goal attainment scaling: Clinical implications for paediatric occupational therapy practice. Australian Occupational Therapy Journal. 2003;50(4):216-224. 13. Bailey DB, Simeonsson RJ. Investigation of use of goal attainment scaling to evaluate individual progress of clients with severe and profound mental retardation. Mental Retardation. 1988;26(5):289. 14. Simeonsson RJ, Huntington GS, Short RJ. Individual differences and goals: An approach to the evaluation of child progress. Topics in Early Childhood Special Education. 1982;1(4):71-80. 15. Chapparo C. Perceive, Recall, Plan and Perform (PRPP): Occupationcentred Task Analysis and Intervention System. In: Rodger S, Kennedy-Behr A, editors. Occupation-centred practice with children: A practical guide for occupational therapists: John Wiley & Sons 2017. p. 189-208. 16. Toglia JP, Rodger SA, Polatajko HJ. Anatomy of cognitive strategies: A therapist’s primer for enabling occupational performance. Canadian Journal of Occupational Therapy. 2012;79(4):225-236. 17. Lerner JW, Johns B. Learning disabilities and related disabilities: Strategies for success. Cengage Learning; 2014. 18. Lindenschot M, Groot IJM, Nijhuis - Van Der Sanden MW, et al. Insight into performance of daily activities in real life of a child with limited physical cognitive and communication abilities: A case report. Journal of Occupational Therapy, Schools & Early Intervention. 2021. doi: https://doi.org/10.1080/194 11243.2021.1941495. 19. Lindenschot M, de Groot IJ, Nijhuis - Van Der Sanden MW, et al. Perceive, Recall, Plan and Perform (PRPP)-Assessment based on parent-provided videos of children with mitochondrial disorder: action design research on implementation challenges. Phys Occup Ther Pediatr. Accepted for publication. 20. Nott MT, Hons BO, Chapparo C, et al., editors. Measuring task embedded information processing capacity during occupational performance: an application of Rasch Measurement. Proceedings of the Australian Consortium for Social and Political Research, Social Science Methodology Conference, The University of Sydney, Australia (December); 2006.

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