Instruments that evaluate functional independence in children with Cerebral Palsy: a systematic review of observational studies

Santos, Patrícia Domingos dos; Silva, Franciele Cascaes da; Ferreira, Elizandra Gonçalves; Iop, Rodrigo da Rosa; Bento, Gisele Graziele; Silva, Rudney da

doi:10.1590/1809-2950/15260723032016

Patrícia Domingos dos Santos

Physiotherapist and MSc Student in Human Movement Sciences of CEFID/UDESC - Florianópolis (SC), Brazil.

Franciele Cascaes da Silva

Physiotherapist and PhD Student in Human Movement Sciences of CEFID/UDESC - Florianópolis (SC), Brazil.

Elizandra Gonçalves Ferreira

Physical Education Professional and PhD Student in Human Movement Sciences of CEFID/UDESC - Florianópolis (SC), Brazil.

Rodrigo da Rosa Iop

Physiotherapist and PhD Student in Human Movement Sciences of CEFID/UDESC - Florianópolis (SC), Brazil.

Gisele Graziele Bento

Physical Education Professional and PhD Student in Human Movement Sciences of CEFID/UDESC - Florianópolis (SC), Brazil.

Rudney da Silva

Full Professor at UDESC - Florianópolis (SC), Brazil.

Mailing address: Health and Sport Sciences Center, State University of Santa Catarina - Rua Pascoal Simone, 358, Coqueiros - Florianópolis (SC), Brazil - CEP: 88080-350 - E-mail: patrícia.domingos.santos@outlook.com

Conflict of interest: Nothing to declare

Main themes	Keywords used
Assessment tools	"Patient Outcome Assessment"[Mesh] OR "Assessment, Patient Outcome" OR "Outcome Assessment, Patient" OR "Assessments, Patient Outcome" OR "Outcome Assessments, Patient" OR "Patient Outcome Assessments" OR "Assessment, Patient Outcomes" OR "Patient Outcomes Assessment" OR "Outcomes Assessments, Patient" OR "Disability Evaluation"[Mesh] OR "Disability Evaluations" OR "Evaluation, Disability" OR "Evaluations, Disability" OR "Outcome Assessment (Health Care)"[Mesh] OR "Assessment, Outcomes" OR "Assessments, Outcomes" OR "Outcomes Assessments" OR "Instruments" OR "Inventory" OR "Questionnaires"[Mesh] OR "Evaluation instruments" OR "functional outcome" OR "Scales" OR "Form"
Functional independence	"Disability Evaluation"[Mesh] OR "Disability Evaluations" OR "Evaluation, Disability" OR "Evaluations, Disability" OR"Functional independence" OR "Functional Independence Measure" OR "Functional Assessment" OR "Disability measures" OR "Functional status measures" OR "Performance evaluation" OR "Disability evaluation" OR "Functional capacity" OR "Functional performance"
Cerebral palsy	"Cerebral Palsy"[Mesh] OR "CP (Cerebral Palsy)"
Children	"Children" OR "Child" OR "Preschool" OR "Disabled children"
Type of study	"Epidemiologic studies" OR "Exp case control studies" OR "Exp cohort studies" OR "Case control" OR "Cohort adj" (study or studies) OR "Cohort analys" OR "Follow up adj" (study or studies) OR "Observational adj" (study or studies) OR "Longitudinal" OR "Retrospective" OR "Cross sectional" OR "Cross-sectional studies"

Author/year	Place/Type of study:	Objectives	Average age and standard deviation (years)	Sample (n) Sex (n)	Classification of PC severity	Classification level n (%)	Instrument used	Justification for using the instrument
HOLSBEEKE et al. (2009)⁹9. Holsbeeke L, Ketelaar M, Schoemaker MM, Gorter JW. Capacity, capability, and performance: different constructs or three of a kind? Arch Phys Med Rehabil. 2009;90(5):849-55.	Netherlands/Transversal study	Analyze the relationship between motor skills (what the children are able to do in a standardized and controlled environment, and what they can do in their daily environment), and among the performance of motor skills of children with CP.	1.5 (± NI)***	n = 85 Male= 47 Female = 38	GMFCS	I = 27(32.0) II = 10(12.0) III = 23(27.0) IV = 17(20.0) V = 8(9.0)	PEDI	PEDI features good psychometric properties.
GUNEL et al. (2009)¹⁰10. Gunel MK, Mutlu A, Tarsuslu T, Livanelioglu A. Relationship among the Manual Ability Classification System (MACS), the Gross Motor Function Classification System (GMFCS), and the Functional Status (WeeFIM) in children with cerebral palsy. Eur J Pediatr. 2009; 168(4):477-85.	Turkey/Transversal study	To investigate the relationship between the functional classification systems: MACS (Manual Ability Classification System), GMFCS (Motor Function Classification System) and WeeFim in children with spastic CP.	7.0 (± NI)***	n = 185 Male= 101 Female = 84	GMFCS	I = 64(34.5) II = 27(14.5) III = 38(20.5) IV = 35(18.9) V = 21(11.6)	WeeFIM	Is one of the most used methods for pediatric functional evaluation; studies have demonstrated its reliability and validity, both for disabled and healthy children.
SMITS et al. (2010)¹¹11. Smits DW, Gorter JW, Ketelaar M, Van Schie PE, Dallmeijer AJ, Lindeman E, et al. Relationship between gross motor capacity and daily-life mobility in children with cerebral palsy. Dev Med Child Neurol . 2010;52(3):60-6.	Netherlands/Cohort	To analyze the relationship between gross motor function and daily mobility in children with CP; and to explore the moderation of this relationship with the PC severity.	6.2 (±1.0)	n = 116 Male= 76 Female = 40	GMFCS	I = 56(48.0) II = 20(17.0) III = 17(15.0) IV = 9(8.0) V = 14(12)	PEDI	The PEDI (Dutch version) was used because it has good psychometric properties.
MEESTER- DELVER et al. (2009)¹²12. Meester-Delver A, Beelen A, Ketelaar M, Hadders-Algra M, Nollet F, Gorter JW. Construct validity of the capacity profile in presscholl children with cerebral palsy. Dev Med Child Neurol . 2009;51(6):446-53.	Netherlands/Transversal study	To validate CAP and verify the association between the CAP and PEDI domains of the (Caregiver's Assistance), as well as the independent contribution for each domain of the CAP to PEDI (Functional Skills)	2.6 (± NI)***	n = 72 Male= 56 Female = 16	GMFCS	I = 24(33.3) II = 8(11.1) III = 18(25.0) IV = 14(19.5) V = 8(11.1)	PEDI	CAP classifies the need of additional care for children.
HALEY et al. (2009)¹³13. Haley SM, Fragala-Pinkham MA, Dumas HM, Pengsheng Ni, Gorton GE, Watson K, et al. Evaluation of an item bank for a computerized adaptive test of activity in children with cerebral palsy. Phys Ther. 2009;89(6):589-600.	Canada and United States/Transversal	To analyze psychometric properties of a new database and simulate an adapted test to assess the abilities of children with CP.	10,7 (± 4.0)	n = 308 Male= 169 Female = 139	GMFCS	I = 75(24.3) II = 91(29.6) III = 79(25.6) IV = 37(12.0) V = 26(8.5)	PODCI WeeFIM	PODCI is commonly used in clinical environments and in research to measure abilities of children with CP. WeeFim is a standard measure used in many hospitals and its scores include a motor function score.
MOREAU et al. (2010)¹⁴14. Moreau NG, Simpson KN, Teefey SA, Damiano DL. Muscle architecture predicts maximum strength and is related to activity levels in cerebral palsy. Phys Ther. 2010;90(11): 1619-30.	United States/Case Control	To develop a predictive regression model of the maximum knee extensor strength; and to quantify the relation between structural muscle parameters and muscle activity and participation measures of children and adolescents with and without PC.	12.0 (± 3.2) 12.3 (± 3.9)	n = 18 CP* 12 DT ** Male = 9 CP Female = 9 CP Male = 2 DT Female = 10DT	GMFCS	I = 4(22.2) II = 2(11.1) III = 9(50.0) IV = 3(16.6) V = 0(0.0)	PODCI ASKp	PODCI has been widely used in children with CP. It has high internal consistency, test-retest reliability, excellent concurrent validity in relation to GMFCS and is sensitive to changes after orthopedic surgeries. ASKp is able to discriminate GMFCS levels in individuals with PC in all subdomains; it has excellent reliability test-retest and good validity (content, concurrent and construct) in children with musculoskeletal disorders.
ÖHRVALL et al. (2010)¹⁵15. Öhrvall AN, Eliasson AC, Löwing K, Ödman P, Krumlinde-Sundholm L. Self-care and mobility skills in children with cerebral palsy: related to their manual ability and gross motor function classifications. Dev Med Child Neurol . 2010;52(11):1048-55.	Sweden/Transversal study	To investigate the acquisition of self-care and mobility skills in children with CP regarding their manual ability and gross motor function.	8.1 (± 3.9)	n = 195 Male= 122 Female = 73	GMFCS	I = 90(46.0) II = 32(16.0) III = 29(15.0) IV = 21(11.0) V = 23(12.0)	PEDI	Not informed.
PARKES; McGULLOUGH; MADDEN (2010)¹⁶16. Parkes J, McCullough N, Madden A. To what extent do children with cerebral palsy participate in everyday life situations? Health Soc Care Community. 2010;18(3):304-15.	Northern Ireland (UK)/transversal study	To describe the participation of children with CP in daily life situations; to investigate the relationship between the participation of children with paternal characteristics; to compare the frequency of participation of children with CP with children with or without disabilities.	9.81 (± NI)***	n = 102 Male= 63 Female = 39	GMFCS	I = 17(17.0) II = 32(31.0) III = 17(17.0) IV = 14(14.0) V = 22(22.0)	LIFE-H	LIFE-H has been used previously in populations with PC; it is validated and shows evidence of satisfactory reliability.
KERR et al. (2011)¹⁷17. Kerr C, McDowell BC, Parkes J, Stevenson M, Cosgrove AP. Age-related changes in energy efficiency of gait, activity, and participation in children with cerebral palsy. Dev Med Child Neurol . 2011;3(1):61-7.	Ireland/Prospective Longitudinal study	To describe the relationship between age and energetic efficiency during the gait, activity and participation of children with CP.	10.8 ± 3.6	n = 184 Male= 112 Female = 72	GMFCS	I = 57(31.0) II = 91(49.5) III = 22(12) IV = 14(7.5) V = 0(0.0)	PEDI	PEDI was developed to evaluate the functionality of children aged between 6 months to 7 years, but can be used for older children, since they present functional abilities inferior to the expected for children with typical development (aged between 6 months and 7 years).
TSENG et al. (2011)¹⁸18. Tseng MH, Chen KL, Shieh JY, Lu L, Huang CY. The determinants of daily function in children with cerebral palsy. Res Dev Disabil. 2011;32(1):235-45.	Twain/Transversal study	To identify the determinants of daily function in a sample of children with CP.	8.2 (± 3.4)	n = 216 Male= 124 Female = 92	GMFCS	I = 44(20.4) II = 51(23.6) III = 52(24.1) IV = 30(13.9) V = 39(18.1)	PEDI	When used in children with CP, PEDI show excellent internal consistency, test-retest reliability, concurrent validity and discriminative validity.
KIM; PARK (2011)¹⁹19. Kim WH, Park EY. Causal relation between spasticity, strength, gross motor function and functional outcome in children with cerebral palsy: a path analysis. Dev Med Child Neurol . 2011;53(1):68-73.	Korea/Transversal study	To examine the causal relationship between spasticity, weakness, motor function, and functional outcome in children with CP and tested models of functional measures mediated by the gross motor function.	10.3 (±1.7)	n = 81 Male= 50 Female = 31	GMFCS	I = 14(17.3) II = 9(11.1) III = 13(16.0) IV = 5(6.2) V = 40(49.4)	PEDI	Not informed.
MOREAU; FALVO; DAMIANO (2012)²⁰20. Moreau NG, Falvo MJ, Damiano DL. Rapid force generation is impaired in cerebral palsy and is related to decreased muscle size and functional mobility. Gait Posture. 2012;35(1):154-8.	United States/Case Control	To analyze the rate of strength development and the characteristics of the knee extensor impulse in children with CP and those with typical development, and determine predictive parameters of muscle strength and impulse.	11.9 (± 2.9) .3 G911,3 (± 3.0)	n = 12 CP* 11 DT Men = NI* Fem = NI***	GMFCS	I = 4(33.3) II = 2(16.7) III = 6(50.0) IV = 0(0.0) V = 0(0.0)	PODCI ASKp	PODCI measures the self-reported physical function and psychosocial aspects of the health status in children with musculoskeletal disability. ASK is also a self-report measure for children; it is reliable, valid and responsive to physical disabilities.
RAMSTAD et al. (2012)²¹21. Ramstad K, Jahnsen R, Skjeldal OH, Diseth TH. Parent-reported participation in children with cerebral palsy: the contribution of recurrent musculoskeletal pain and child mental health problems. Dev Med Child Neurol . 2012;54(9):829-35.	Norway/Transversal study	To explore the contribution of recurrent musculoskeletal pain and mental health for the elements in children with CP.	14.0 (±3.0)	n = 105 Male= 54 Female = 51	GMFCS	I = 35(33.0) II = 42(40.0) III = 16(15.0) IV and V = = 12(11,0)	LIFE-H	LIFE-H has shown good discrimination among participation levels; the version for children has been validated in children with various disabilities, including CP, with moderate to excellent results.
CAMARGOS et al. (2012)²²22. Camargos ACR, Lacerda TTB, Barros TV, Silva GC, Parreiras JT, Vidal THJ. Relação entre independência funcional e qualidade de vida na paralisia cerebral. Fisiot Mov. 2012; 25(1):83-92.	Brazil/Transversal study	To assess the relation between functional independence and the quality of life of children with CP.	7.7 (± 2.3)	n = 30 Male= 21 Female = 09	GMFCS	I = 9(30.0) II = 6(20.0) III = 2(6.7) IV = 2(6.7) V = 11(36.6)	PEDI	Not informed.
VOS et al. (2013)²³23. Vos RC, Becher JG, Ketelaar M, Smits DW, Voorman JM, Tan SS, et al. Developmental trajectories of daily activities in children and adolescents with cerebral palsy. Pediatrics. 2013;132(4):915-23.	Netherlands/Prospective Longitudinal study	Describe the development paths of mobility and performance in the daily life activities of children and young people with CP; and to explore the influence of the gross motor function and intellectual disabilities in these trajectories.	NI (± NI)*** Age ranged between 1 and 16 years	n = 424 Male = NI* Female = NI*	GMFCS	I = 212(50.0) II = 55(13.0) III = 60(14.0) IV = 55(13.0) V = 42(10.0)	VABS	VABS is a reliable and validated instrument.
BJORNSON et al. (2013)²⁴24. Bjornson KF, Zhou C, Stevenson R, Christakis DA. Capacity to participation in cerebral palsy: evidence of an indirect path via performance. Arch Phys Med Rehabil . 2013;94(12): 2365-72.	United States/Prospective Longitudinal study	To examine the hypothesis that the influence of the physical exercise ability on the participation is mediated through the activity performance.	6.2 (± 2.3)	n = 128 Male= 76 Female = 52	GMFCS	I = 44(35.0) II = 54(42.0) III = 30(23.0) IV = 0(0.0) V = 0(0.0)	LIFE-H ASKp CAPE/CAP	LIFE-H and CAPE/CAP were chosen because they were developed from different theoretical models; and also they were validated with different methodologies and measure participation under complementary perspectives. ASKp is a self-reported measure or reported by parents for children aged between 5 and 15 years.
PARK; KIM (2013)²⁵25. Park EY, Kim WH. Structural equation modeling of motor impairment, gross motor function, and the functional outcome in children with cerebral palsy. Res Dev Disabil . 2013;34(5):1731-9.	Korea/Transversal study	To confirm the construct of motor impairment and to carry out a model of structural equations between motor impairment, gross motor function, and the functional outcomes on the daily life activities of children with CP.	11,4 (±1.75)	n = 98 Male= 59 Female = 39	GMFCS	I = 16(16.3) II = 10(10.2) III = 15(15.3) IV = 6(6.1) V = 51(52.0)	PEDI	Not informed.
ELAD et al. (2013)²⁶26. Elad D, Barak S, Eisenstein E, Bar O, Givon U, Brezner A. Discrepancies between mothers and clinicians in assessing functional capabilities and performance of children with cerebral palsy. Res Dev Disabi. 2013;34(11):3746-53.	Israel/Transversal study	To investigate the agreement between health professionals and mothers in relation to capacity and performance of children with CP, and the impact of PC severity in this agreement.	8.8 (±2.1)	n = 73 Male= 40 Female = 33	GMFCS	I = 6(8.2) II = 26(35.6) III = 15(20.5) IV = 16(21.9) V = 10(13.7)	PEDI	PEDI is a measure widely used and well regarded in research about PC and in clinical environments; it is deemed valid and reliable for children with CP (aged between 6 and 12 years).
KWON et al. (2013)²⁷27. Kwon TG, Yi SH, Kim TW, Chang HJ, Kwon JY. Relationship between gross motor function and daily functional skill in children with cerebral palsy. Ann Rehabil Med. 2013;37(1):41-9.	Korea/Transversal study	To investigate the relation between the gross motor function and functional daily skills in children with CP and to explore how this relationship is moderated by GMFCS, BFMF (Bimanual Fine Motor Function), neuromotor types and involvement of the limbs in CP.	5.9 (±1.5)	n = 112 Male = 64 Female = 48	GMFCS	I = 32(28.6) II = 31(27.7) III = 28(25.0) IV = 16(14.3) V = 5(4.5)	PEDI	To evaluate daily functional abilities in children with CP for clinical and experimental purposes.
ASSIS-MADEIRA; CARVALHO; BLASCOVI-ASSIS (2013)²⁸28. Assis-Madeira EA, Carvalho SG, Blascovi-Assis SM. Functional performance of children with cerebral palsy from high and low socioeconomic status. Rev Paul Pediatr. 2013;31(1):51-7.	Brazil/Transversal study	To investigate the influence of socioeconomic status on the functional performance of children with CP.	5.13 (± 1.4)	n = 49 Male = 24 Female = 25	GMFCS	I and II = 16(32.6) III = 17(34.7) IV and V = 16(32.6)	PEDI	Not informed.
BULT et al. (2012)²⁹29. Bult MK, Verschuren O, Lindeman E, Jongmans MJ, Westers P, Claassen A, et al. Predicting leisure participation of school-aged children with cerebral palsy: longitudinal evidence of child, family and environmental factors. Child Care Health Dev. 2012;39(3):374-80.	Netherlands/Longitudinal study	Determine which child, family and environmental variables measured at the age of 2 years predict the participation in leisure, in formal and informal activities of school-age children and with PC.	2.6 (±1.0)	n = 46 Male = 26 Female = 20	GMFCS	I = 14(30.0) II = 3(7.0) III = 13(28.0) IV = 11(24.0) V = 5(11.0)	CAPE/PAC VABS PEDI	Not informed.
BJORNSON et al. (2014)³⁰30. Bjornson KF, Zhou C, Stevenson RD, Christakis D. Relation of stride activity and participation in mobility-based life habits among children with cerebral palsy. Arch Phys Med Rehabil . 2014;95(2):360-8.	United States/ Cohort study	To examine the relationship between the gait performance and participation in mobility related to daily life habits in children with PC.	6.2 (± 2.3)	n = 128 Male= 76 Female = 52	GMFCS	I = 44(35.0) II = 54(42.0) III = 30(23.0) IV = 0(0.0) V = 0(0.0)	LIFE-H	Not informed.
SMITS et al. (2014)³¹31. Smits DW, Gorter JW, Van Schie PE, Dallmeijer AJ, Ketellar M, et al. How do changes in motor capacity, motor capability, and motor performance relate in children and adolescents with cerebral palsy? Arch Phys Med Rehabil . 2014;95(8):1577-84.	Netherlands/ Prospective Longitudinal study	To investigate the relationship between changes in motor skills (what the individual does in a standardized environment and what he/she can do in the daily environment), and the motor performance in children with CP.	6.6 (± 3.9)	n = 321 Male = 200 Female = 121	GMFCS	I = 135(42.0) II = 48(15.0) III = 54(17.0) IV = 42(13.0) V = 42(13.0)	PEDI	PEDI identifies changes in motor skills and in the motor performance of children with CP.
KETELAAR et al. (2014)³²32. 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;16(4):769-74.	Netherlands/ Cohort	To describe the development of mobility and self-care in children with CP and to analyze if the development of these capabilities differs by the degree of The CP severity.	NI* (± NI)* Age ranged between 1 and 4 years	n = 92 Male = 54 Female = 38	GMFCS	I = 28(30.4) II = 12(13.0) III = 23(25.0) IV = 20(21.7) V = 09(9.8)	PEDI	PEDI is a standardized instrument that uses the parent's report through a structured interview.

Assessment tool	Number of domains assessed	Domains assessed
PEDI	3	Self-care, mobility, and social function.
WeeFIM	3	Self-care, mobility, and cognition.
ASK	9	Self-care, dressing skills, feeding (eating and drinking), locomotion, games, standing abilities, transfers, use of stairs, and other tasks.
PODCI	5	Upper extremity and physical function; transfers and mobility; sports and physical activity; pain and comfort; expectation of the treatment, happiness and satisfaction with the symptoms.
VABS	5	Communication, daily living skills (self-care, feeding, and personal hygiene), socialization, motor skills and non-adaptive behavior.
LIFE-H	12	Nutrition, self-care, physical fitness, communication, domestic activities, mobility, responsibility, interpersonal relationships, life in community, education, work, and recreation.
CAPE/PAC	5	Physical activity, recreation, social activities, self-care, and abilities.

[1] Mailing address: Health and Sport Sciences Center, State University of Santa Catarina - Rua Pascoal Simone, 358, Coqueiros - Florianópolis (SC), Brazil - CEP: 88080-350 - E-mail: patrícia.domingos.santos@outlook.com

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Instruments that evaluate functional independence in children with Cerebral Palsy: a systematic review of observational studies

ABSTRACT