Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

Keynote webinar | Spotlight on medication adherence

LIVE: Thursday 27th June 2024, 18:00-19:30 (CEST)
Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.
ADVANCED SEARCH
Log in
Top
BMC Pediatrics
Published in: BMC Pediatrics 1/2020

Open Access 01-12-2020 | Study protocol

Study protocol: functioning curves and trajectories for children and adolescents with cerebral palsy in Brazil – PartiCipa Brazil

Authors: Paula S. C. Chagas, Carolyne M. Drumond, Aline M. Toledo, Ana Carolina de Campos, Ana Cristina R. Camargos, Egmar Longo, Hércules R. Leite, Kênnea M. A. Ayupe, Rafaela S. Moreira, Rosane L. S. Morais, Robert J. Palisano, Peter Rosenbaum, on Behalf of PartiCipa Brazil Research Group

Published in: BMC Pediatrics | Issue 1/2020

Login to get access

Abstract

Background

Gross motor development curves for children with Cerebral Palsy (CP), grouped by Gross Motor Function Classification System (GMFCS) levels, help health care professionals and parents to understand children’s motor function prognosis. Although these curves are widely used in Brazil to guide clinical decision-making, they were developed with Canadian children with CP. Little is known about how these patterns evolve in children and adolescents with CP in low-income countries like Brazil. The PARTICIPA BRAZIL aims to: (i) to identify and draw a profile of functioning and disability of Brazilian children and adolescents with CP by classifying them, for descriptive purposes, with all five valid and reliable functional classifications systems (gross motor function, manual ability, communication function, visual and eating and drinking abilities); (ii) to create longitudinal trajectories capturing the mobility capacity of Brazilian children and adolescents with CP for each level of the GMFCS; (iii) to document longitudinal trajectories in the performance of activities and participation of Brazilian children and adolescents with CP across two functional classification systems: GMFCS and MACS (Manual Abilities Classification System); (iv) to document longitudinal trajectories of neuromusculoskeletal and movement-related functions and exercise tolerance functions of Brazilian children and adolescents with CP for each level of the GMFCS; and (v) to explore interrelationships among all ICF framework components and the five functional classification systems in Brazilian children and adolescents with CP.

Methods

We propose a multi-center, longitudinal, prospective cohort study with 750 Brazilian children and adolescents with CP from across the country. Participants will be classified according to five functional classification systems. Contextual factors, activity and participation, and body functions will be evaluated longitudinally and prospectively for four years. Nonlinear mixed-effects models for each of the five GMFCS and MACS levels will be created using test scores over time to create prognosis curves. To explore the interrelationships among ICF components, a multiple linear regression will be performed.

Discussion

The findings from this study will describe the level and nature of activities and levels of participation of children and youth with CP in Brazil. This will support evidence-based public policies to improve care to this population from childhood to adulthood, based on their prognosis.
Literature
1.
Rosenbaum P, Paneth N, Leviton A, Goldstein M, Bax M, Damiano D, et al. A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol Suppl. 2007;109:8–14.PubMed
2.
Organization WH. International classification of functioning, disability and health: ICF. Geneva: WHO Library; 2001.
3.
Novak I. Evidence-based diagnosis, health care, and rehabilitation for children with cerebral palsy. JChild Neurol. 2014;29(8):1141–56.CrossRef
4.
Aiona MD, Sussman MD. Treatment of spastic diplegia in patients with cerebral palsy: part II. J Pediatr Orthop B. 2004;13(3):S13–38.PubMed
5.
Chagas PSC, Mancini MC. Instrumentos de avaliação e de classificação utilizados na criança com Paralisia Cerebral. Paralisia Cerebral: Neurologia, Ortopedia e Reabilitação. Belo Horizonte: Editora MedBook; 2008.
6.
7.
Novak I, Morgan C, Adde L, Blackman J, Boyd RN, Brunstrom-Hernandez J, et al. Early, accurate diagnosis and early intervention in cerebral palsy: advances in diagnosis and treatment. JAMA Pediatr. 2017;171(9):897–907.PubMedCrossRef
8.
Paulson A, Vargus-Adams J. Overview of four functional classification systems commonly used in cerebral palsy. Children (Basel). 2017;4(4):10.
9.
Baranello G, Signorini S, Tinelli F, Guzzetta A, Pagliano E, Rossi A, et al. Visual function classification system for children with cerebral palsy: development and validation. Dev Med Child Neurol. 2020;62(1):104–10.PubMedCrossRef
10.
Palisano R, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol. 1997;39(4):214–23.PubMedCrossRef
11.
Rosenbaum PL, Walter SD, Hanna SE, Palisano RJ, Russell DJ, Raina P, et al. Prognosis for gross motor function in cerebral palsy: creation of motor development curves. JAMA. 2002;288(11):1357–63.PubMedCrossRef
12.
Jeffries LM, LaForme FA, Westcott McCoy S, Bartlett D, Avery L, Hanna S, et al. Developmental trajectories and reference percentiles for range of motion, endurance, and muscle strength of children with cerebral palsy. Phys Ther. 2019;99(3):329–38.PubMedCrossRef
13.
Hanna SE, Bartlett DJ, Rivard LM, Russell DJ. Reference curves for the gross motor function measure: percentiles for clinical description and tracking over time among children with cerebral palsy. Phys Ther. 2008;88(5):596–607.PubMedPubMedCentralCrossRef
14.
Hanna SE, Rosenbaum PL, Bartlett DJ, Palisano RJ, Walter SD, Avery L, et al. Stability and decline in gross motor function among children and youth with cerebral palsy aged 2 to 21 years. Dev Med Child Neurol. 2009;51(4):295–302.PubMedCrossRef
15.
Smits DW, Gorter JW, Riddell CA, Voorman JM, Rosenbaum PL, Palisano RJ, et al. Mobility and self-care trajectories for individuals with cerebral palsy (aged 1-21 years): a joint longitudinal analysis of cohort data from the Netherlands and Canada. Lancet Child Adolesc Health. 2019;3(8):548–57.PubMedCrossRef
16.
Ketelaar M, Gorter JW, Westers P, Hanna S, Verhoef M. Developmental trajectories of mobility and self-care capabilities in young children with cerebral palsy. J Pediatr. 2014;164(4):769–74.PubMedCrossRef
17.
Tan SS, Wiegerink DJ, Vos RC, Smits DW, Voorman JM, Twisk JW, et al. Developmental trajectories of social participation in individuals with cerebral palsy: a multicentre longitudinal study. Dev Med Child Neurol. 2014;56(4):370–7.PubMedCrossRef
18.
Van Gorp M, Roebroeck ME, Swan Tan S, de Groot V, Gorter JW, Smits DW, et al. Activity performance curves of individuals with cerebral palsy. Pediatrics. 2018;142(5):12.
19.
Galea C, McIntyre S, Smithers-Sheedy H, Reid SM, Gibson C, Delacy M, et al. Cerebral palsy trends in Australia (1995-2009): a population-based observational study. Dev Med Child Neurol. 2019;61(2):186–93.PubMedCrossRef
20.
Khandaker G, Smithers-Sheedy H, Islam J, Alam M, Jung J, Novak I, et al. Bangladesh cerebral palsy register (BCPR): a pilot study to develop a national cerebral palsy (CP) register with surveillance of children for CP. BMC Neurol. 2015;15:173.PubMedPubMedCentralCrossRef
21.
Scrutton D, P. R. The locomotor development of children with cerebral palsy. Neurophysiology ans neuropsychology of motor development. London: Mac Keith Press; 1997. p. 101–23.
22.
Crawford JR, Garthwaite PH. On the "optimal" size for normative samples in neuropsychology: capturing the uncertainty when normative data are used to quantify the standing of a neuropsychological test score. Child Neuropsychol. 2008;14(2):99–117.PubMedCrossRef
23.
Palisano RJ, Chiarello LA, Avery L, Hanna S. On track study T. self-care trajectories and reference percentiles for children with cerebral palsy. Phys Occup Ther Pediatr. 2020;40(1):62–78.PubMedCrossRef
24.
25.
McCoy SW, Palisano R, Avery L, Jeffries L, Laforme Fiss A, Chiarello L, et al. Physical, occupational, and speech therapy for children with cerebral palsy. Dev Med Child Neurol. 2020;62(1):140–6.PubMedCrossRef
26.
Muggeo V, Sciandra M, Tomasello A, Calvo S. Estimating growth charts via nonparametric quantile regression: a practical framework with application in ecology. Environ Ecol Stat. 2013;20:519–31.CrossRef
27.
ABEP. Critério de classificação econômica Brasil 2019.
28.
Stevenson RD. Use of segmental measures to estimate stature in children with cerebral palsy. Arch Pediatr Adolesc Med. 1995;149(6):658–62.PubMedCrossRef
29.
Palisano RJ, Rosenbaum P, Bartlett D, Livingston MH. Content validity of the expanded and revised gross motor function classification system. DevMed Child Neurol. 2008;50(10):744–50.CrossRef
30.
Hanna S. Assessing the stability of functional classifications for pediatric disability. Dev Med Child Neurol. 2019;61(7):740.PubMedCrossRef
31.
Compagnone E, Maniglio J, Camposeo S, Vespino T, Losito L, De Rinaldis M, et al. Functional classifications for cerebral palsy: correlations between the gross motor function classification system (GMFCS), the manual ability classification system (MACS) and the communication function classification system (CFCS). Res Dev Disabil. 2014;35(11):2651–7.PubMedCrossRef
32.
Harvey AR, Morris ME, Graham HK, Wolfe R, Baker R. Reliability of the functional mobility scale for children with cerebral palsy. Phys Occup Ther Pediatr. 2010;30(2):139–49.PubMedCrossRef
33.
Graham HK, Harvey A, Rodda J, Nattrass GR, Pirpiris M. The functional mobility scale (FMS). J Pediatr Orthop. 2004;24(5):514–20.PubMedCrossRef
34.
Russell DJ, Rosenbaum PL, Wright V, L A. The gross motor function measure (GMFM-66 and GMFM-88 User's manual). 2nd ed. London: MacKeith Press; 2013.
35.
Wright FV, Lam CY, Mistry B, Walker J. Evaluation of the reliability of the challenge when used to measure advanced motor skills of children with cerebral palsy. Phys Occup Ther Pediatr. 2018;38(4):382–94.PubMedCrossRef
36.
Graser JV, Letsch C, van Hedel HJA. Reliability of timed walking tests and temporo-spatial gait parameters in youths with neurological gait disorders. BMC Neurol. 2016;16:15.PubMedPubMedCentralCrossRef
37.
Wilson A, Kavanaugh A, Moher R, McInroy M, Gupta N, Salbach NM, et al. Development and pilot testing of the challenge module: a proposed adjunct to the gross motor function measure for high-functioning children with cerebral palsy. Phys Occup Ther Pediatr. 2011;31(2):135–49.PubMedCrossRef
38.
Thompson P, Beath T, Bell J, Jacobson G, Phair T, Salbach NM, et al. Test-retest reliability of the 10-metre fast walk test and 6-minute walk test in ambulatory school-aged children with cerebral palsy. Dev Med Child Neurol. 2008;50(5):370–6.PubMedCrossRef
39.
Haley SM, Coster WJ, Dumas HM, Fragala-Pinkham MA, R.M. PEDI-CAT version 1.3.6. Development, Standardization and Administration Manual. Boston: CREcare, LLC; 2012.
40.
Khetani MA, Graham JE, Davies PL, Law MC, Simeonsson RJ. Psychometric properties of the young Children's participation and environment measure. Arch Phys Med Rehabil. 2015;96(2):307–16.PubMedCrossRef
41.
Coster W, Law M, Bedell G, Khetani M, Cousins M, Teplicky R. Development of the participation and environment measure for children and youth: conceptual basis. Disabil Rehabil. 2012;34(3):238–46.PubMedCrossRef
42.
Haley SM, Coster WJ, Dumas HM, Fragala-Pinkham MA, Kramer J, Ni P, et al. Accuracy and precision of the Pediatric evaluation of disability inventory computer-adaptive tests (PEDI-CAT). Dev Med Child Neurol. 2011;53(12):1100–6.PubMedPubMedCentralCrossRef
43.
Mancini MC, Coster WJ, Amaral MF, Avelar BS, Freitas R, Sampaio RF. New version of the Pediatric evaluation of disability inventory (PEDI-CAT): translation, cultural adaptation to Brazil and analyses of psychometric properties. Braz J Phys Ther. 2016;20(6):561–70.PubMedPubMedCentralCrossRef
44.
Galvão ÉRVP, Cazeiro APM, De Campos AC, Longo E. Medida da Participação e do Ambiente-Crianças e Jovens (PEM-CY). Revista de Terapia Ocupacional da Universidade de São Paulo. 2018;29(3):237–45.CrossRef
45.
Silva Filho JAC, A. P. M, Campos AC, Longo E. Medida da Participação e do Ambiente - Crianças Pequenas (YC-PEM): tradução e adaptação transcultural para o uso no Brasil. Rev Ter Ocup Univ Sao Paulo. 2020; in press.
46.
Jeffries L, Fiss A, McCoy SW, Bartlett DJ. Description of primary and secondary impairments in young children with cerebral palsy. Pediatr Phys Ther. 2016;28(1):7–14.PubMedCrossRef
47.
Westcott McCoy S, Yocum A, Bartlett DJ, Mendoza J, Jeffries L, Chiarello L, et al. Development of the early activity scale for endurance for children with cerebral palsy. Pediatr Phys Ther. 2012;24(3):232–40.PubMedCrossRef
48.
Fitzgerald D, Hickey C, Delahunt E, Walsh M, O'Brien T. Six-minute walk test in children with spastic cerebral palsy and children developing typically. Pediatr Phys Ther. 2016;28(2):192–9.PubMedCrossRef
49.
Cacau LA, de Santana-Filho VJ, Maynard LG, Gomes MN, Fernandes M, Carvalho VO. Reference values for the six-minute walk test in healthy children and adolescents: a systematic review. Braz J Cardiovasc Surg. 2016;31(5):381–8.PubMedPubMedCentral
50.
Verschuren O, Takken T, Ketelaar M, Gorter JW, Helders PJ. Reliability and validity of data for 2 newly developed shuttle run tests in children with cerebral palsy. Phys Ther. 2006;86(8):1107–17.PubMedCrossRef
51.
Verschuren O, Bosma L, Takken T. Reliability of a shuttle run test for children with cerebral palsy who are classified at gross motor function classification system level III. Dev Med Child Neurol. 2011;53(5):470–2.PubMedCrossRef
52.
Jain M, Passi GR. Assessment of a modified mini-mental scale for cognitive functions in children. Indian Pediatr. 2005;42(9):907–12.PubMed
53.
Moura R, Andrade PMO, Fontes PLB, Ferreira FO, Salvador LS, Carvalho MRS, et al. Mini-mental state exam for children (MMC) in children with hemiplegic cerebral palsy. Dement Neuropsychol. 2017;11(3):287–96.PubMedPubMedCentralCrossRef
54.
55.
Rosenbaum P, Gorter JW. The 'F-words' in childhood disability: I swear this is how we should think! Child Care Health Dev. 2012;38(4):457–63.PubMedCrossRef
56.
Leite HR, Chagas PSC, Rosenbaum P. Childhood disability: can people implement the F-words in low and middle-income countries – and how? Braz J Phys Ther. 2020; in press.
Metadata
Title
Study protocol: functioning curves and trajectories for children and adolescents with cerebral palsy in Brazil – PartiCipa Brazil
Authors
Paula S. C. Chagas
Carolyne M. Drumond
Aline M. Toledo
Ana Carolina de Campos
Ana Cristina R. Camargos
Egmar Longo
Hércules R. Leite
Kênnea M. A. Ayupe
Rafaela S. Moreira
Rosane L. S. Morais
Robert J. Palisano
Peter Rosenbaum
on Behalf of PartiCipa Brazil Research Group
Publication date
01-12-2020
Publisher
BioMed Central
Published in
BMC Pediatrics / Issue 1/2020
Electronic ISSN: 1471-2431
DOI
https://doi.org/10.1186/s12887-020-02279-3

Other articles of this Issue 1/2020

BMC Pediatrics 1/2020 Go to the issue

Research article

Utility of medical record diagnostic codes to ascertain attention-deficit/hyperactivity disorder and learning disabilities in populations of children

Research article

Effective surgical treatment of life-threatening huge vascular anomalies associated with thrombocytopenia and coagulopathy in infants unresponsive to drug therapy

Case report

Chronic cutaneous candidiasis in children: should we stop there? Report of two cases associated with auto-immune polyendocrinopathy syndrome type I

Research article

Exacerbations and Pseudomonas aeruginosa colonization are associated with altered lung structure and function in primary ciliary dyskinesia

Research article

Right ventricular function among South East Nigeria children with sickle cell anaemia

Research article

Healthcare access and adverse family impact among U.S. children ages 0–5 years by prematurity status