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

318 Instruments that evaluate functional independence in children with Cerebral Palsy: a systematic review of observational studies Instrumentos que avaliam a independência funcional em crianças com paralisia cerebral: uma revisão sistemática de estudos observacionais Instrumentos que evalúan la independencia funcional en niños con parálisis cerebral: revisión sistemática de estudios observacionales Patrícia Domingos dos Santos1, Franciele Cascaes da Silva2, Elizandra Gonçalves Ferreira3, Rodrigo da Rosa Iop4, Gisele Graziele Bento5, Rudney da Silva6


INTRODUCTION
Cerebral palsy (CP) is a non-progressive injury that affects the central nervous system at immature and developing stages, causing postural deficits, motor dysfunctions, cognitive and mobility changes [1][2][3] .The set of disorders present in children with CP can limit their performance in functional activities and affect their daily life activities, such as feeding, clothing, locomotion, personal care, and social interaction 1,4,5 .
The functional evaluation of children with CP must be individualized and carried out by a multidisciplinary team.These evaluations aim to collect the maximum information on the functional activity of the child, to help determine the goals of the treatment 6 .Functionality evaluations are divided into two groups: assessment of body structure and function (musculoskeletal system, mobility, locomotion); and evaluation of activities (daily life skills: feeding, clothing, personal care) and participation (socialization, community life), according to a consensus of the World Health Organization (WHO) and International Classification of Functioning, Disability and Health (ICF) [6][7][8] .
The choice and use of instruments that assess functionality depend on the therapeutic objectives and goals to be achieved; therefore, the knowledge of the instruments favors the planning of therapeutic strategies 6 .Based on the above, this systematic review aimed to identify the instruments that assess functional independence of children with cerebral palsy through observational studies.

METHODOLOGY
This systematic review was conducted between September and October 2014.The studies were searched in MEDLINE/Pubmed (Medical Literature Analysis and Retrieval System on-line), Web of Science, and Scopus.The descriptors used for the search, according to the Medical Subject Headings (MeSH)/Pubmed, are listed in Table 1.In addition to MeSH terms, we used keywords found in the previously obtained articles.
Inclusion criteria were as follows: observational studies (cross-sectional, cohort, and case control), published in the last five years, with full text available, which evaluated functionality and had as sample children with cerebral palsy of both sexes.We excluded articles that evaluated other populations (adolescents, adults, and older adults) or children with other types of disabilities; semiexperimental or experimental studies; articles not assessing functionality or using instruments that did not meet the main areas of functional independence (mobility, self-care, and participation); and studies in duplicate, as shown in Figure 1.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" The search was conducted by three independent reviewers, who first read the titles, then the abstracts, and, finally, the full articles.In cases of differences of the selected articles, the reviewers repeated the procedures until the discrepancies were corrected.
After the selection of 24 articles for qualitative and quantitative analysis, we collected the following information: author(s) and year of publication, place of study, type of study, research aim and follow up time, sample number, average age, sex of participants, instrument used to classify the severity of cerebral palsy, classification of CP's functional level and instrument used to evaluate children's functional independence, and aspects related to the choice of the instrument, as shown in Table 2.   11.9 (± 2.9) .

RESULTS
We identified a total of seven instruments that sought to assess functional independence of children with cerebral palsy.As can be seen in Table 2, PEDI was the most used instrument (15 studies), followed by LIFE-H (4 studies), ASK and PODCI (each one used in 3 studies), and WeeFIM, VABS-II, and CAPE/ PAC (each one used in two studies).Some studies have used more than one instrument to assess children's functionality.These instruments assess different areas to try to characterize functional independence, as shown in Table 3.
The Gross Motor Function Classification System (GMFCS) was the instrument used by all studies of this review to classify the severity of CP.It was the most used scale to classify the severity of CP by the instruments that assessed functionality.This consists of a scale that uses child's locomotion for the evaluation, ranking the child in five levels of motor performance 6 .
The Pediatric Evaluation of Disability Inventory (PEDI) is a standardized instrument that uses information provided by parents or guardians of the child (from 6 months to 7 years and a half ) in the form of a structured interview.The questionnaire items are grouped into three areas: self-care, mobility, and social function, and, for each domain, three independent scores are calculated: 1) functional ability level 2) help from a caregiver, and 3) modifications 22 .
The Pediatric Functional Independence Measure (WeeFIM) was developed to measure the functional independence of children with disabilities.It is a questionnaire filled out by the answers given by parents/ guardians, and can also be carried out by observations of the child 33 .WeeFIM was designed to measure the need for aid and the severity of the disability in children aged between 6 months and 7 years.This instrument measures the level of independence in self-care, sphincter control, locomotion, mobility, communication, and social function 34 .The Activities Scale for Kids (ASK) is an instrument that assesses and monitors functional changes in children of 5 to 15 years with physical limitations caused by musculoskeletal disorders.It is a self-administered questionnaire, and it can be answered by parents or caregivers when the child is not able.The instrument has 30 items, grouped into 9 areas: self-care, dressing up, eating and drinking, other skills, locomotion, playtime, standing skills, transfers, and use of stairs 35,36 .
The Pediatric Outcomes Data Collection Instrument (PODCI) assesses general health, pain, and participation in daily life activities.It is used for children between 2 and 18 years with general health problems.It consists of 108 items, grouped into 5 areas: upper extremity and physical function, transfers and mobility, sports and physical activity, pain and comfort, treatment expectations, happiness, and satisfaction with the symptoms 35,36 .
The Vineland Adaptive Behavior Scale (VABS) was developed to assess adaptive behaviors of individuals from zero to 90 years old.Vineland has 5 domains (with 2 or 3 subdomains each): communication, daily living abilities (self-care, personal care, feeding), socialization, motor skills, and non-adaptive behavior (unwanted) 37 .It is used for evaluating functionality in everyday life, measuring deficits in adaptive behavior, and complementing diagnoses of autistic spectrum disorder, emotional and behavioral disorders, and delays in development 37 .
The Assessment of Life Habits (LIFE-H) was developed for adults and children and seeks to assess life habits and disadvantageous situations, which are concepts related to social participation.The instrument includes 12 categories: nutrition, self-care, physical fitness, communication, domestic activities, mobility, responsibilities, interpersonal relationships, life in community, education, work, and recreation 38 .
The Children's Assessment of Participation and Enjoyment (CAPE) and Preferences for Activities in Children (PAC) are instruments developed together to evaluate the nature of participation and the effectiveness of interventions aimed at increasing such participation (social and community).It was developed for children from 6 to 21 years old 39 , and can be self-administered or applied by a interview.The CAPE/PAC includes 55 formal and informal activities, which are organized into 5 categories: physical activity, recreation, social activities, self-care, and skills 39 .

DISCUSSION
We found, in the analyzed studies, a total of seven instruments that aim to assess functional independence of children with cerebral palsy.These instruments sought to evaluate the degree of independence, mobility, impairment, social participation, performance in daily life activities (DLA), and overall health.They are instruments widely used and disseminated in the clinical and academic areas.Some are used exclusively for children, others for children with or without disabilities, and some are used to evaluate the functionality of adults and older adults.The instruments found in this review sought to evaluate children with CP with different objectives: complementing clinical diagnoses, helping strategies of interventions (medicine, physiotherapy, occupational therapy, education, among others), expanding academic research, and validating new instruments (concurrent validity).
Currently, functionality is considered a component of health, and the instruments used to evaluate children with CP must be able to describe in detail their development, quantifying the function, and allowing the objective analysis of their evolution.Children with CP must have their development followed, and the use of these instruments helps the forwarding of strategies, interventions and treatments, and also verifies their effectiveness 40 .
The instruments that seek to evaluate functionality are based on ICF and seek to prioritize functionality as a component of health and environment as a facilitator or barrier to the performance of daily life actions and tasks.Therefore, these instruments seek to assess "body structure" (anatomical parts, as the musculoskeletal system), "body function" (physiological and psychological functions: digestion, growth, behavior, and memory), "activities" (communication, clothing, reading, and problem solving), and "participation" (involvement in family and community life) 6,40 .
PEDI is a very widespread instrument and one of the most used to measure the functionality of children with disabilities.It examines the motor and self-care function, as well as the participation of the children in their social dimension.PEDI, therefore, reflects more closely the areas of activity and participation of ICF than other instruments.Its clinical relevance is also supported by the evidence that motor skills are not necessarily representative of all functional improvements followed by therapeutic interventions 22,41,42 .In Brazil, PEDI was validated in 2000, and, since then, it is an instrument that has been fairly used in clinical practice and that has several studies published in the country, which supports its use.It presents evidence of good clinical utility and, for covering a wide age range, is useful in the planning of programs focused on improving the functional performance of children 43 .PEDI, WeeFIM, and PODCI are generic questionnaires that measure the effect of a condition on an individual's functionality, health and/or self-care in a variety of environments 41 .These instruments are widely used in research with children and largely accepted.WeeFIM is little used in Brazil, and this is due to the fact that it has not yet been validated in Brazilian Portuguese 6 .
PODCI is a multidisciplinary instrument and can be applied by professionals from various research fields.It is considered a sensitive instrument to detect changes in health conditions and also comprehensive, as it can be used to assess children, adolescents, and caregivers.It is widely used for pediatric patients and a variety of conditions, such as asthma, sleep apnea, neuromuscular and musculoskeletal disorders 44 .LIFE-H and ASK, in the study of Andrade 45 , were selected as being among the instruments that meet most of the criteria of ICF's evaluation.VABS is the most used instrument for the assessment of social adaptation in Brazil 46 .
The child with CP must be evaluated in various environments (school, home, clinics, parks, leisure time) and not only in controlled environments, as many instruments do.Thus, some instruments are more suitable than others and some are complementary.The essential is to know which instrument is best suited for the situation, for the child, and for meeting the goal of the evaluation and/or treatment.
Movement is crucial to the independence of the human being, and is through it that people explore the environment in which they live.Children with CP should be encouraged, because the improvement of their motor skills means the acquisition of their independence and ability to adapt to society.Evaluating the functional impact of motor disability is critical in the evaluation of children with CP, because functional capacity is related to their health and is one of the determining factors of their quality of life 40 .The importance of independence in daily routine for the integral development of children with CP is essential because, as children acquire autonomy in performing simple tasks, they become less dependent, which helps and enables their insertion in social life.

CONCLUSION
Currently, there is a wide variety of instruments developed to evaluate children with and without disabilities.Some were developed exclusively for children with cerebral palsy, but are already widespread and used for other diseases.This review aimed to find instruments used in the evaluation of functional independence of children with CP.PEDI was the most found and, according to the literature, it is an instrument that follows most recommendations of the WHO and ICF; thus, it is reliable, sensitive, and widely disseminated and used.Some of the instruments found are not used exclusively for children, which could explain their lower use in the studies.
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.

*
Cerebral palsy ** Typical Development ** Not informed, the age was turned into years

Table 1 .
Keywords used for the search, according to the Medical Subject Headings (MeSH)/Pubmed

Table 2 .
Instruments used to evaluate functional independence of children with CP

Table 3 .
Domains assessed by instruments