Measuring developmental and functional status in children ...

1 Measuringdevelopmental andfunctional status inchildren withdisabilitiesKenneth J Ottenbacher*PhD University of Texas MedicalBranch, Galveston, Texas;Michael E MsallMD, The Child Development Center,Providence, Rde Island;Nancy LyonRN PNP, Robert Warner Rehabilitation Center;Linda C DuffyPhD, children s Hospital of Buffalo;Carl V GrangerMD;Susan BraunMLS OTR; State University of New York;Buffalo, New York, USA.*Correspondence to first author atUniversity of TexasMedical Branch, SAHS , 301 University Blvd,Galveston, TX 77555, study compared performance on the FunctionalIndependence Measure for children (WeeFIMTM), theBattelle developmental Inventory Screening Test (BDIST),and the vineland adaptive behavior Scales (VABS) inchildren with developmental disabilities. The threeinstruments were administered to 205 children with identifieddisabilities.

2 All 205 children were tested using the WeeFIMinstrument. The BDIST was administered to 101 children andthe VABS to the remaining 104 children . Administration wascounterbalanced and randomized across all threeinstruments. A proportional sampling plan was used to selectthe 205 children , who ranged in age from 11 to 87 months. Avariety of medical diagnoses and levels of severity of motor,cognitive, and communication impairments weresystematically included in the sample. Correlations (r) amongsubscales for all three instruments ranged from to for total scores ranged from to of potential moderator variables found nosignificant relation between age and severity of disability(r= ) or between socioeconomic status (SES) and severityof disability (r= ). Correlations with age were strongestfor those subscale scores involving gross and fine motor with SES and subscale scores ranged from The three instruments provide important informationregarding childhood performance in motor, self-care,communicative, cognitive, and social skills.

3 The WeeFIMinstrument requires less administration time and providesinformation directly relevant to evaluating functionaloutcomes for children with disabilities and their assessment of functional skills has been identified as apriority in early intervention and developmental research(Coster and Haley 1992, Butler 1995). Functionally basedtreatment and outcomes that focus on daily living skills arenecessary for age-appropriate program planning, evalua-tion, documentation, and reimbursement in both clinicaland educational environments (Garwood 1982, Haley et , Butler 1995). There is also a need to identify assess-ments that are easy to administer; provide useful informa-tion to developmental specialists, parents, and teachers; andcan be incorporated into the daily routine of busy health-care practitioners and educational assessment in children is described by McCabeand Granger (1990) as an effort to systematically describeand measure a child s abilities and limitations when perform-ing the activities of daily living (p 121).

4 Function is an impor-tant component of a comprehensive evaluation because itidentifies what the child can accomplish in a specific environ-ment (Msall et al. 1994a, b). The advantages of functionalassessment include: the consideration of special equipmentor assistive devices in completing a task, and a focus on sup-ports necessary for success in the least restrictive communityand educational environment. In addition, the task perfor-mance, not the process or method used to achieve the out-come, is emphasized. For instance, independent locomotioncan be achieved via walking or using a wheelchair. The inabil-ity to walk produces a low score on a developmental evalua-tion, but not on an instrument assessing functional mobility,if the child is capable of using a wheelchair. Two pediatric functional assessments currently exist for usewith children : the functional Independence Measure forChildren (WeeFIM) (Guide 1993a) and the Pediatric Evaluationof Disability Inventory (PEDI) (Haley et al.)

5 1992). Each instru-ment measures functional ability, taking into account the use ofspecial equipment and amount of caregiver assistance. In con-trast to the 18 items of the WeeFIM instrument, the PEDI includes 73 Self-care items, 59 Mobility items, and 65 SocialFunction items (total 197). There is some overlap betweenWeeFIM assessment items and the PEDI Caregiver andModifications scales. Table I compares the WeeFIM and severalother commonly used pediatric WeeFIM instrument is designed to be administered byeither direct observation or interview of a primary caregiver(parent, relative, teacher, or reliable respondent) whoknows the child well. The goal of the WeeFIM instrument isto measure changes in function over time to weigh the bur-den of care in terms of physical, technologic, and financialresources.

6 (Braun and Granger 1991). Several investigatorsusing the WeeFIM instrument have reported excellent con-sistency between ratings (ICC from to ) collected bydirect observation and those obtained by interview of a pri-mary caregiver (Msall et al. 1993a, Sperle et al. 1997). Thetest retest and interrater reliability of the WeeFIM have alsobeen examined and found to be excellent with ICC valuesfrom to for subscale and total ratings (Msall et , Ottenbacher et al. 1996, Sperle et al. 1997).The relation between functional assessment scales andtraditional developmental evaluations of adaptive behaviorhas not been systematically examined. The purpose of thisinvestigation was to compare the ratings obtained from theWeeFIM instrument with those from two widely used pedi-atric assessments: the vineland adaptive behavior Scales186 developmental Medicine & Child Neurology 1999, 41: 186 194(VABS) (Sparrow et al.)

7 1984) and the Battelle DevelopmentalInventory Screening Test (BDIST) (Newborg et al. 1984). MethodSUBJECTSH ealth and disability characteristics Two-hundred and five children receiving special services foridentified developmental disabilities participated in theinvestigation. Their age ranged from 11 to 87 months ( , SD ). All children had a confirmed medical diag-nosis and were receiving treatment and/or developmentalchild support services in early intervention or school-basedprograms. The extent of disability ranged from mild impair-ment to severe multiple disability (see description below). Aproportional sampling plan based on severity of disability,type of disability, and age was used to ensure that childrenwere evenly distributed. Etiology was determined by medicaldiagnosis. The most common medical conditions were cere-bral palsy, prematurity, Down syndrome, spina bifida, epilep-sy, and genetic impairments.

8 Severity of disability was basedon scores from standardized developmental assessmentsadministered to the children to identify their original needfor developmental and medical services. The instrumentsincluded the Bayley Scales of Mental and MotorDevelopment (Bayley 1994), Clinical adaptive Test/ClinicalLinguistic Auditory Milestone scale (CAT/CLAMS) (Hoon etal. 1993, Rossman et al. 1994, Wachtel et al. 1994) andMcCarthy Scales (McCarthy 1972). At their initial entry intothe medical service delivery system, the children were testedby licensed professionals with these instruments. Sixty-eightMeasurement of developmental and functional status Kenneth J Ottenbacher et I: Comparison of the Pediatric Evaluation of Disability Index (PEDI), functional Independence Measure for children (WeeFIM), vineland adaptive behavior Scales (VABS), and Battelle developmental Inventory Screening Test (BDIST)

9 PEDIWeeFIMBDISTVABSP urposeDiscriminative Evaluative measureDiscriminativeDiscriminativemeasu re of functionalof performance ofmeasure ofmeasure oflimitations infunctional skills indevelopmentaldevelopmentalchildren 6 mo to ychildren 6 mo to 8 yskills in childrenskills for childrenbirth to 8 ybirth to 18 yDomainsMotorSelf-carePersonal-socialCom municationSelf-careSphincter TransfersAdaptiveDaily LivingSocialLocomotionMotorSocialization CommunicationCommunicationMotorSocial CognitionCognitionStandardization412 non-disabled children532 non-disabled children800 non-disabled children1200 children 0 to 71 mo102 disabled children500 disabled children160 children with 1000 children100 children in earlyhandicappingwith cognitive andinterventionconditions500 children withsensory disabilitiesReliabilityExcellent test retestExcellent test retestTest retest; andSplit half for domainsand interraterand interrater;interrater good-and composite,(ICC = )equivalence reliabilityexcellent (r= )excellent;of phone interviewtest retest, (ICC = )excellent;interrater, good(r= )ValidityConcurrent withConcurrent withConcurrent withConcurrent with IQBattelle andVABS, Battelle, andVABS and WISC-Rand other adaptiveWeeFIM WeeFIM (See Table II)(r= )measures(r= )(r= )Time to45 min20 min35 min45minadministerApplicationParent interviewMeasures of 3 to 7 yNormal andPreschool andformat for childrenfunctional status ofdisabledlong-term outcomewith CP.

10 ClinicalVLBW cohorts inpreschooler in VLBW children ;evaluation aftersurfactant with use in allrhizotomy andFunctional goaldevelopmental developmentaltraumatic brainsetting in childrendisabilities in early disabilitiesinjurywith CP, spina bifida,elementary schooland genetic disabilitiesEI, early intervention; CP, cerebral palsy; MR, mental (32%) had standardized scores between and SDs below the mean (mild disability) on one or more ofthe instruments. One-hundred and four children (51%) hadstandardized developmental scores between and (moderate disability), and 33 children (16%) had stan-dardized scores greater than SDs below the mean(extreme disability). Demographic characteristics The majority of the children in the sample were white (70%).Twenty-one percent were African American, 6% wereHispanic, and 3% were other.