The reliability and validity of the perceive, recall, plan and perform assessment in children with a mitochondrial disorder

References

• Gorman GS, Schaefer AM, Ng Y, et al. Prevalence of nuclear and mitochondrial DNA mutations related to adult mitochondrial disease. Ann Neurol. 2015;77(5):753–759.
   PubMed Web of Science ®Google Scholar
• Koopman WJ, Beyrath J, Fung CW, et al. Mitochondrial disorders in children: toward development of small-molecule treatment strategies. EMBO Mol Med. 2016;8(4):311–327.
   PubMed Web of Science ®Google Scholar
• Dassler A, Allen PJ. Mitochondrial disease in children and adolescents. Pediatr Nurs. 2014;40(3):150–154.
   PubMedGoogle Scholar
• Kisler JE, Whittaker RG, McFarland R. Mitochondrial diseases in childhood: a clinical approach to investigation and management. Dev Med Child Neurol. 2010;52(5):422–33.
   PubMed Web of Science ®Google Scholar
• Koene S, Smeitink J. Mitochondrial medicine: entering the era of treatment. J Intern Med. 2009;265(2):193–209.
   PubMed Web of Science ®Google Scholar
• 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;13(1):15–24.
   PubMed Web of Science ®Google Scholar
• Coyne I, Hallstrom I, Soderback M. Reframing the focus from a family-centred to a child-centred care approach for children's healthcare. J Child Health Care. 2016;20(4):494–502.
   PubMed Web of Science ®Google Scholar
• Lindenschot M, Steultjens EMJ, Zajec J, et al. The perspectives and values of children with a mitochondrial disorder with regard to everyday activities. J Dev Phys Disabil. 2020;32(3):509–534.
   Web of Science ®Google Scholar
• Anastasi A. Psychological testing. New York: MacMillan Publishing Co.; 1988. p. 102.
   Google Scholar
• Keller J, Kafkes A, Kielhofner G. Psychometric characteristics of the child occupational self assessment (COSA), part one: an initial examination of psychometric properties. Scand J Occup Ther. 2005;12(3):118–127.
   PubMedGoogle Scholar
• Linton S. Disability studies/not disability studies. Disabil Soc. 1998;13(4):525–539.
   Google Scholar
• McLaren C, Rodger S. Goal attainment scaling: clinical implications for paediatric occupational therapy practice. Aust Occ Ther J. 2003;50(4):216–224.
   Google Scholar
• Bailey DB, Simeonsson RJ. Investigation of use of goal attainment scaling to evaluate individual progress of clients with severe and profound mental retardation. Ment Retard. 1988;26(5):289–295.
   PubMedGoogle Scholar
• Simeonsson RJ, Huntington GS, Short RJ. Individual differences and goals: an approach to the evaluation of child progress. Top Early Child Spec Educ. 1982;1(4):71–80.
   Google Scholar
• Chapparo C. Perceive, Recall, Plan and Perform (PRPP): occupation centred task analysis and intervention system. In Rodger S, Kennedy-Behr A, editors. Occupation-centred practice with children: a practical guide for occupational therapists. chichester, UK: John Wiley & Sons 2017. p. 189–208.
   Google Scholar
• Toglia JP, Rodger SA, Polatajko HJ. Anatomy of cognitive strategies: a therapist's primer for enabling occupational performance. Can J Occup Ther. 2012;79(4):225–236.
   PubMed Web of Science ®Google Scholar
• Lerner JW, Johns B. Learning disabilities and related disabilities: strategies for success. Boston (MA): Cengage Learning; 2014.
   Google Scholar
• 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. J Occup Ther Schools Early Interv. 2021. DOI:10.1080/19411243.2021.1941495
   Google Scholar
• 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. DOI:10.1080/01942638.2022.2086024
   Web of Science ®Google Scholar
• Nott MT, Hons BO, Chapparo C, et al. editors. Measuring task embedded information processing capacity during occupational performance: an application of Rasch measurement. In: Proceedings of the Australian consortium for social and political research, social science methodology conference. Australia: The University of Sydney; 2006.
   Google Scholar
• Nott MT, Chapparo C, Heard R. Reliability of the perceive, recall, plan and perform system of task analysis: a criterion-referenced assessment. Aust Occup Ther J. 2009;56(5):307–314.
   PubMed Web of Science ®Google Scholar
• Lowe S. Cognitive strategies and school participation for students with learning difficulties [Doctoral Thesis]. Sydney, Australia: The University of Sydney; 2010.
   Google Scholar
• Stewart KS. Information processing strategy application: a longitudinal study of typically developing preschool and school aged children [Doctoral Thesis]. Sydney, Australia: University of Sydney; 2010.
   Google Scholar
• Mills C, Chapparo C, Hinitt J. The impact of an in-class sensory activity schedule on task performance of children with autism and intellectual disability: a pilot study. Br J Occup Ther. 2016;79(9):530–539.
   Web of Science ®Google Scholar
• Nott MT, Chapparo C. Measuring information processing in a client with extreme agitation following traumatic brain injury using the perceive, recall, plan and perform system of task analysis. Aust Occup Ther J. 2008;55(3):188–198.
   PubMed Web of Science ®Google Scholar
• Nott MT, Chapparo C. Exploring the validity of the perceive, recall, plan and perform system of task analysis: cognitive strategy use in adults with brain injury. Br J Occup Ther. 2012;75(6):256–263..
   Web of Science ®Google Scholar
• Nott MT, Chapparo C. Cognitive strategy use in adults with acquired brain injury. Brain Inj. 2020;34(4):508–514.
   PubMed Web of Science ®Google Scholar
• Van Keulen-Rouweler BJ, Sturkenboom IH, Kottorp A, et al. The perceive, recall, plan and perform (PRPP) system for persons with Parkinson's disease: a psychometric study. Scand J Occup Ther. 2017;24(1):65–73.
   PubMed Web of Science ®Google Scholar
• Sturkenboom IH, Nott MT, Bloem BR, et al. Applied cognitive strategy behaviours in people with Parkinson's disease during daily activities: a cross-sectional study. J Rehabil Med. 2020;52(1):jrm00010. DOI:10.2340/16501977-2635
   Google Scholar
• Aubin G, Chapparo C, Gélinas I, et al. Use of the perceive, recall, plan and perform system of task analysis for persons with schizophrenia: a preliminary study. Aust Occup Ther J. 2009;56(3):189–199.
   PubMed Web of Science ®Google Scholar
• Steultjens EM, Voigt-Radloff S, Leonhart R, et al. Reliability of the perceive, recall, plan, and perform (PRPP) assessment in community-dwelling dementia patients: test consistency and inter-rater agreement. Int Psychogeriatr. 2012;24(4):659–665.
   PubMed Web of Science ®Google Scholar
• Ranka JL, Chapparo CJ. Assessment of productivity performance in men with HIV associated neurocognitive disorder (HAND). Work. 2010;36(2):193–206.
   PubMedGoogle Scholar
• Lindenschot M, de Groot IJ, Koene S, et al. Everyday activities for children with mitochondrial disorder: a retrospective chart review. Occup Ther Int. 2018;2018:1–8.
   Google Scholar
• Chapparo C, Ranka J. The perceive, recall, plan and perform system of task analysis. In Chapparo C, Ranka J, editors. Occupational performance model (Australia). Monograph 1: Total Print Control; 1997. p. 189–198.
   Google Scholar
• Chapparo C, Ranka J. The PRPP system of task analysis: user’s training manual research edition. Lidcombe: OP Network, School of OLS, Usyd, PO Box. 2008. Vol. 170.
   Google Scholar
• Steultjens EM. PRPP system of task analysis: Dutch user's training manual. Zeist: Ergologie; 2014.
   Google Scholar
• Law MC, Baptiste S, Carswell A, et al. Canadian occupational performance measure. Ottawa, ON: Canadian Association of Occupational Therapists; 1998. (Book, Whole).
   Google Scholar
• Dedding C, Cardol M, Eyssen IC, et al. Validity of the Canadian occupational performance measure: a client-centred outcome measurement. Clin Rehabil. 2004;18(6):660–667.
   PubMed Web of Science ®Google Scholar
• van der Molen-Meulmeester EA, Verkerk GJQ. Aanvullende handleiding voor het gebruik van de canadian occupational performance measure (COPM) bij kinderen zelf. Amsterdam: Amsterdam UMC, locatie AMC; 2019.
   Google Scholar
• De Vet HC, Terwee CB, Mokkink LB, et al. Measurement in medicine: a practical guide. Cambridge, UK: Cambridge University Press; 2011.
   Google Scholar
• Walter S, Eliasziw M, Donner A. Sample size and optimal designs for reliability studies. Statist Med. 1998;17(1):101–110.
   PubMed Web of Science ®Google Scholar
• Mokkink LB, Terwee CB, Knol DL, et al. The COSMIN checklist for evaluating the methodological quality of studies on measurement properties: a clarification of its content. BMC Med Res Methodol. 2010;10:22.
   PubMed Web of Science ®Google Scholar
• Chapparo C, Ranka J. Occupational performance model (Australia): monograph 1. Occupational Performance Network; 1997. Available from: http://www.occupationalperformance.com/wp-content/uploads/2014/01/origin.pdf
   Google Scholar
• World Health O. International classification of functioning, disability, and health: children & youth version: ICF-CY. Geneva, Switzerland: World Health Organization; 2007. (Book, Whole).
   Google Scholar
• Landis JR, Koch GG. The measurement of observer agreement for categorical data. Biometrics. 1977;33(1):159–174.
   PubMed Web of Science ®Google Scholar
• Mokkink LB, Terwee CB, Patrick DL, et al. The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study. Qual Life Res. 2010;19(4):539–549.
   PubMed Web of Science ®Google Scholar
• Mokkink LB, Terwee CB, Patrick DL, et al. COSMIN checklist manual. 2009. Amsterdam: VU University Medical Centre.
   Google Scholar
• Terwee CB, Mokkink LB, Knol DL, et al. Rating the methodological quality in systematic reviews of studies on measurement properties: a scoring system for the COSMIN checklist. Qual Life Res. 2012;21(4):651–657.
   PubMed Web of Science ®Google Scholar
• Bond TG, Yan Z, Heene M. Applying the Rasch model: fundamental measurement in the human sciences. New York and London: Routledge Taylor & Francis Group; 2021.
   Google Scholar
• Bond TG, Fox CM, Lacey H, editors. Applying the Rasch model: fundamental measurement in the social sciences. 2nd ed. London, UK: Routledge (Taylor & Francis Group); 2007.
   Google Scholar
• Wright B, Linacre J, Gustafsson J-E, et al. Reasonable mean-square fit values. Rasch Meas Trans. 1994;8:370.
   Google Scholar
• General Assembly of the World Medical A World medical association declaration of Helsinki: ethical principles for medical research involving human subjects. J Am College Dentists. 2014;81(3):14–18.
   PubMedGoogle Scholar
• Stafford A, Laybourn A, Hill M, et al. Having a say’: children and young people talk about consultation. Child Soc. 2003;17(5):361–373.
   Google Scholar
• Streiner DL, Norman GR, Cairney J. Health measurement scales: a practical guide to their development and use. USA: Oxford University Press; 2015.
   Google Scholar
• Terwee CB, Bot SD, de Boer MR, et al. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol. 2007;60(1):34–42.
   PubMed Web of Science ®Google Scholar
• Siegler RS. Cognitive variability. Dev Sci. 2007;10(1):104–109.
   PubMed Web of Science ®Google Scholar
• Koene S, Smeitink JAM, Hirano M. Mitochondrial medicine: a clinical guideline. Nijmegen, The Netherlands: Khondrion; 2011. Book, Whole.
   Google Scholar
• Keller J, Kafkes A, Basu S, et al. The child occupational self assessment (COSA) (version 2.1). Chicago: University of Illinois, College of Applied Health Sciences, Department of Occupational Therapy, MOHO Clearinghouse. 2005.
   Google Scholar
• Hayley S, Coster S, Ludlow L, et al. Pediatric evaluation of disability inventory (PEDI) development, standardization and administration manual. Boston, MA: New England Center Hospital. 1992.
   Google Scholar
• Koene S, Jansen M, Verhaak CM, et al. Towards the harmonization of outcome measures in children with mitochondrial disorders. Dev Med Child Neurol. 2013;55(8):698–706.
   PubMed Web of Science ®Google Scholar
• Aubin G, Gélinas I, Stip E, et al. editors. Interrater reliability of an occupation focused assessment in mental health: the perceive, recall, plan and perform system of task analysis. Sydney: WFOT Congress; 2006.
   Google Scholar