* Correspondence to first author at Shriners Hospitals for Children, 3100 Samford Avenue, Shreveport, Louisiana 71103, MO, USA. E-mail: email@example.com
Little data exists assessing the relationship between functional limitations in children with cerebral palsy (CP) and their participation in everyday activities. This prospective study evaluates the relationship between the Pediatric Outcomes Data Collection Instrument (PODCI), a functional health-related quality of life instrument for children and their parents, and the School Function Assessment (SFA), a school-based functional assessment. One hundred and two children with CP (80.4% dipliegia; 10.8% hemiplegia; 3.9% triplegia; 2.0% quadriplegia; 2.9% unspecified; 60 males, 42 females, mean age 11 years 8 months (SD 3y 3mo, range 6–8y), Gross Motor Function Classification System levels I to IV (13.7% Level I 50% Level II 35.3% Level III 1% Level IV), had complete PODCI and SFA assessments. Significant relationships were noted among multiple PODCI subscales and subscales of the SFA, as well as among individual questions. PODCI predicted performance in all 31 subscales of the SFA when comorbidity subscales were included (r =0.35–0.64). The PODCI in-clinic questionnaire provides an accurate reflection of the child’s actual participation in the community setting, as assessed by the SFA. PODCI can reliably be used to help ensure that outcomes assessed in the clinic setting reflect function within the community, and can be used to help with treatment planning, goal setting, and improved patient care.
‘Functional health assessment determines what the patient is doing. It deals both with tasks (lifting, walking) and roles (student, shopkeeper, dock worker). It measures the quality of life.’, p.683.1 Treatments may act measurably in the body structure and function dimension by changing the musculoskeletal system, but we must demonstrate positive effects in what the child does in everyday life (participation). Goldberg notes, ‘Functional health status should record how the unobserved child with cerebral palsy (CP) proceeds from one location to another quickly, efficiently, and with minimal energy expenditure.’, p.683–684. He also notes that for adults with CP, the first needs are communication skills, followed by self-care activities of daily living (ADL), and then locomotion or mobility (not necessarily ambulation).1
In a national survey of occupational therapists to identify attitudes and values in their working relationships with parents of preschool children with developmental disabilities (mostly CP), the therapists’ perception of parental concerns about the child’s progress ranked six concerns. Ambulation was ranked as by far the highest parental concern.2 Lepage noted correlation between gross motor function and functional independence skills in CP, including: nutrition, fitness, personal care, communication, mobility, family and interpersonal relations, recreation, education, etc. The most disrupted areas were recreation, community participation, and education, and they found ‘gait speed is a good indicator of overall function (ambulation during ADL) and ability to perform functional gait-related activities.’3 Improving ambulation in the growing child or adolescent may improve other life skills. In the present study population, relatively high-functioning children with ambulatory diplegia, parents’ functional goals are on ambulation and ADL. Whether family goals are for ambulation or other functional skills, defining appropriate outcome measures helps concentrate efforts on function. Having reliable assessment tools is imperative given that children with CP often have significant disabilities likely to affect their participation in recreational and educational activities as well as their personal interactions. This article provides data in support of using the PODCI in the clinic setting to accurately assess a child’s participation in the community, thus enabling the clinician to make treatment decisions based partly on its findings.
Previous articles compare outcomes measures in CP showing measures to be reliable with variable correlations among measures: three-dimensional gait analysis, oxygen cost, Pediatric Evaluation of Disability Inventory, Pediatric Outcomes Data Collection Instrument (PODCI), Child Health Questionnaire, Gross Motor Function Measure (GMFM), Functional Assessment Questionnaire (FAQ), Functional Independence Measure for Children, and the Gross Motor Function Classification System (GMFCS) as a severity rating.4–8 The importance of assessing outcomes across the spectrum of disablement dimensions is clear since a child’s disability affects several areas. Numerous authors have noted the dichotomy between capacity and performance.9–11 Assessments should focus on functional skills and the child’s participation in the environment. For various reasons, what a child actually does in the community may be entirely different from their physical capability to perform the activities. Thus, not only is it important to measure a child’s capacity for a function, but to assess the community performance of that function as well. Most orthopaedic interventions focus upon ambulation and functionally-related skills. Is it possible to accurately assess community participation in the clinic setting? This paper reviews the correlation between the PODCI and SFA, to determine whether healthcare workers can reliably assess the participation dimension using a standardized questionnaire administered in the clinic setting.
This prospective, multicenter evaluation, assesses the relationship between in-clinic measures of body structure and function and activity and participation outcomes questionnaire (PODCI) and a participation measure performed at school (SFA). Study approval was obtained from the Louisiana State University Health Sciences Center in Shreveport Institutional Review Board. Participants were selected to participate in the study if they had a diagnosis of CP, walked with a crouched gait, and signed the IRB-approved consent form. Parents provided consent for children who were unable to sign the IRB-approved Assent Form for participation and provided research staff with contact information for the child’s school therapist and schoolteacher in order to obtain the completed School Function Assessment (SFA). Participants included both English- and Spanish-speaking children from various locations, including Louisiana, Mississippi, Oklahoma, Arkansas, California, and Mexico. Children with CP, walking with crouch at the hip, had in-clinic assessments including Gross Motor Function Measure (GMFM) dimensions D and E, Gillette FAQ, PODCI, Pediatric Qualify of Life Measure, Range of Motion, and 3-Dimensional Gait Analysis (3DGA). PODCI assesses ambulation and other life skills, whereas 3DGA, GMFM, and FAQ focus on ambulation. The SFA, completed by school personnel familiar with the student’s everyday activities, measured community participation. The SFA provides a detailed look at participation in school (385 questions); each child was evaluated in all SFA categories, including requirements for assistance and adaptations and performance in all areas of necessary functioning in school. One hundred and two completed SFA forms were analyzed and compared with clinic measures.
This paper reviews the relationship between the PODCI and SFA to determine whether healthcare workers can reliably assess the participation dimension using a standardized questionnaire given in the clinic setting. The PODCI was administered to parents in their native language by the local research coordinator at each Shriners Hospital. The question posed was whether the in-clinic PODCI accurately reflected findings on the SFA administered by those who see the child every day in the school. The SFA includes questions assessing body function, participation, and contextual factors. PODCI assesses body function, activity, participation, and quality of life. Both primarily assess participation.
Analysis was performed using STATA version 8.0 statistical software and SPSS version 12.0. Primary analysis was simple linear regression analysis. Secondary analysis was parametric statistical analysis of the Pearson's correlation. Significance levels of p<0.01 and p<0.05 are reported when appropriate. We compared both subscales and individual questions by dimension's of the International Classification of Functioning, Disability and Health (ICF) to assess relationships across dimensions. Confidence intervals (CI) at the 95% level were calculated and reported where appropriate.
Final results of the study compared the SFA completed by in-school teams familiar with the child’s day-to-day involvement (teachers, physical therapists, nurses, counselors, and aides) with results of functional outcome assessments completed in-clinic by parents and clinicians. Using simple linear regression analysis, we correlated scores on the SFA with scores obtained in the outpatient clinic setting on the PODCI. PODCI was associated with performance in all subscales of SFA, providing significant correlations across the board, when comorbidity sections were included (all but two, not including comorbidity sections). Evaluating the relationship between scores on the two measures, results indicate that we can reliably assess a child’s performance in the community and school setting based on data obtained in the clinical setting.
Of 102 children (mean age 11y 8mo; range 6–18y [SD 3y 3mo]; 80.4% diplegia; 10.8% hemiplegia; 3.9% triplegia; 2% quadriplegia; 2.9% unspecified; 13.7% GMFCS Level I; 50% Level II; 35.3% Level III; 1% Level IV), in the study, 73% were in a regular classroom setting, while 27% were in a special education classroom; 47% received special education services. Eighty-five percent attended public school; two children a public special needs alternative school. Forty-three percent performed academically at or near grade level. Fifty-one percent of children attended a one-level school. Forty-five percent attended a school reporting all areas wheelchair accessible via elevators and ramps. Primary mobility: 56% walked independently; 39% used an assistive device (crutches, a cane, or walker); four children, manual wheelchair; two children, power wheelchair. Seventy-nine percent of children received school services, including occupational or physical therapy, speech therapy, an academic aide, etc. Ninety-two percent had at least one condition that may affect academic performance, 56% had two or more such conditions, and 24% had three or more conditions that may impair school performance (range=0 to 8).
Results showed significant correlations between contextual factors and the child’s ability to perform school-related tasks. Children ambulating with an assistive device as their primary means of mobility at school require more assistance to perform physical tasks at school (r =0.45, 95% CI 0.28–0.59; p<0.01). Children functioning at or near grade level more consistently performed tasks involving memory and understanding (r =0.46; 95% CI 0.30–0.61; p<0.01); task behavior (r =0.47; 95%CI 0.27–0.59; p<0.01); positive interaction (r =0.45; 95% CI 0.28–0.59; p<0.01) and many other tasks. Children with multiple disabilities had the most difficulty collectively in school performance, with significant correlations in 19 of 31 SFA performance scales.
Parental assessment of a child’s performance in daily activities on PODCI correlated with many areas and specific tasks on actual community performance measures on the SFA. The strongest indicators of a child’s overall performance in school appeared to be three PODCI items: (1) PODCI28, ‘Is it easy or hard for your child to button buttons?’; PODCI48, ‘How often does your child need help from another person for walking or climbing?’; and PODCI56, ‘How often does your child need help from another person for sitting or standing?’
PODCI28, which assesses a child’s ability to button buttons (requiring well-developed fine motor skills) correlated with a child’s ability to complete written work in the school setting (F[1,86]=25.73; p<0.001) as well as a child’s ability to use materials in the classroom, such as turning book pages, removing caps from pens, and cutting out simple shapes. Overall, the PODCI Upper Extremity Subscale correlated with these SFA items as well, specifically written work (F[1,90]=7.43; p=0.007; Fig. 1).
PODCI48, which measures how often a child needs help from another person for walking or climbing, correlated well with a child’s abilities in manipulation with movement, such as carrying objects when walking and opening or closing doors. Other significant correlations included the child’s in-school recreational movement on tasks such as running without falling, skipping, or jumping, as well as the ability to travel throughout the school on both flat and uneven surfaces and keeping an appropriate pace when moving in lines with classmates. PODCI Sports and Physical Function subscale correlated well with recreational movement in the school setting (F[1,86]=37.78; p<0.001; Fig. 2).
Lastly, PODCI56 (how often a child needs help to sit or stand) was associated with the ability to move up and down stairs at school (F[1,54]=7.79; p=0.007; Fig. 3). Based on these findings, parent perception of the child’s performance of these specific tasks reflects actual performance at school.
Results indicated that children requiring the use of assistive devices (PODCI57) often have more difficulty moving up and down stairs at school (F[1,54]=10.10; p=0.002). Also, children having difficulty putting on their own socks (PODCI29) have difficulty with tasks involving written work, including writing appropriately sized letters and numbers, aligning numbers and words as directed, keeping place on a worksheet without omitting items, and writing within designated lines on a page (F[1,84]=18.86; p<0.001).
PODCI has significant correlations with performance and need for task support in 23 of 25 primary SFA categories (all but cognitive-behavioral assistance and cognitive-behavioral adaptations) and all six optional assessment scales.
The PODCI Transfers and Basic Mobility (TBM) Scale was the most closely associated with school performance as assessed by the SFA performance scales. Children with higher TBM scores have less difficulty maintaining and changing positions (F[1,91]=7.73; p=0.007; Fig. 4) and moving up and down stairs (F[1,61]=9.56 p=0.003; Fig. 5); and require less assistance (F[1,57]=11.94; p=0.001) and fewer adaptations (F[1,56]=13.37; p=0.001) in performing stair navigation as well as less assistance (F[1,89]=4.56; p=0.035) to perform physical tasks. The TBM score may be a helpful tool for caregivers in formulating recommendations for special school services.
PODCI is scored in eight outcome subscales: Upper Extremity/Physical Function, Transfers/Basic Mobility, Sports/Physical Function, Pain/Comfort, Expectations, Happiness, Satisfaction with Symptoms, and Global Function/Symptoms, and four scores of comorbidity (body structure and function dimension): overall, Comorbidity Index and three Comorbidity Subscales (CSs), providing 12 scores for each child. The Comorbidity Index was analyzed, as well as each individual CSE. Ten of the 12 available scores correlated significantly with SFA performance scores. PODCI Scale Scores not represented are Pain/Comfort and Expectations. Happiness and Satisfaction scales had only one significant correlation each.
CSs assess the child’s medical and personal history concerning specific conditions which may impact function at school. CSs-1 asks if there is a history of a specific illness or factor, CSs-2 asks if the child is currently receiving treatment for a specific condition, and CSs-3 asks if the condition limits the child’s current activities. While all three comorbidity scales reveal significant relationships, CSs-2 (currently being treated for condition) appears to be the best predictor of SFA performance scores, with the following being among the most significant relationships:
1Child’s need for assistance with cognitive-behavioral tasks (F[1,89]=13.45; p<0.001);
2Child’s need for adaptations for cognitive-behavioral tasks (F[1,87]=8.65; p<0.001);
3Eating and drinking (F[1,91]=12.31; p<0.001);
4Memory and understanding (F[1,90]=8.47; p=0.005);
5Following social conventions (F[1,90];=27.20; p< 0.001);
6Task behaviors (F[1,90]=22.79; p<0.001);
7Positive interactions (F[1,90]=26.61; p<0.001).
These findings suggest that children currently being treated for certain conditions may be more limited in their activities than reported by their parents, as indicated by CSs-3.
Analyzing relationships among the PODCI subscales and school services, children with significant comorbidities appear to require more medical assistance, occupational, and speech therapy. Many PODCI performance measures correlated with services received at school (environmental factors). For example, children having difficulty performing tasks such as getting on and off a toilet or chair (PODCI52; r=0.35; 95% CI 0.17–0.52; p<0.01 and children requiring help more often to walk or climb (PODCI48; r=0.36; 95% CI 0.18–0.52; p<0.01) and to sit or stand (PODCI56; r=0.39; 95% CI 0.21–0.55; p<0.01 are likely to have an activity aide to assist in completing classroom activities. Such findings are reassuring that services may be provided in needed areas.
We found a significant relationship between academic performance and special education placement with individual PODCI items. Children with a history of mental retardation* (PODCI14; F[1,82]=11.13; p=0.001) or children who had greater difficulty buttoning buttons (PODCI28) (F[1,83 =4.90; p=0.030) were significantly more represented in a special education classroom at school. Children not performing at or near their academic grade level were those with a history of attention or behavioral problems (PODCI11; F[1,78]=13.07; p=0.01); a history of mental retardation (PODCI14; F[1,78]=7.38; p=0.008); history of a learning problem (PODCI19) (F[1,78]=14.82; p<0.001), or children who had difficulty buttoning buttons (PODCI28; F[1,79]=11.01; p=0.001). With PODCI CSS included, PODCI items correlated with every SFA performance scale (all 31 items).
This study documents the strong association between the actual community performance of activity and specific questions on the PODCI instrument. The completion of the PODCI in the clinic setting by the child’s parent provides an accurate reflection of activity participation in the school setting in many areas including ambulation, fine and gross motor skills, academic performance, classroom placement, social interactions, and special services provided by school personnel. Our results indicate that clinicians can accurately assess participation by collecting health-related quality of life data from the PODCI.
Michelsen et al.11 evaluated long-term social prognosis of children with CP compared with controls in a large (819 participants, 4406 controls) population-based study based upon national registries in Denmark. Fewer than half of the children with CP advanced to higher education compared with controls. In adults having higher education, (mean age 28y 10mo), 29% were competitively employed (whether or not they had higher education), versus 82% of controls. Half of participants with normal IQ, mainstreamed in school, were employed. Severity of involvement (tetraplegia vs diplegia vs hemiplegia) directly reflected level of education and employment, not controlling for IQ. Thirty-seven percent of participants and 3% of controls received special education; only 1.3% of participants having received special education were employed. Significant predictors of competitive employment were CP subtype, IQ, seizure disorder, parents’ highest level of education, and motor impairment.12
Palisano et al. evaluated the effects of environmental setting on mobility of children with CP in a random sampling of children receiving rehabilitation services.13 Grouping children by age and GMFCS level, parent reports on 636 participants indicated the child's primary means of mobility (carried by adult, pushed in wheelchair, rolls creeps or crawls, walks with support, walks alone, regular wheelchair, power wheelchair) in different settings of home, school, and outdoors. Palisano et al. note severity of neuromuscular and musculoskeletal impairments is extremely variable, and environmental setting may influence mobility. Thus they note a dynamic and reciprocal interaction between person and environment which makes assessment more complex. They comment, ‘Although the daily lives of children with CP include a variety of environmental settings, decisions on interventions to improve mobility have traditionally been based on examinations performed in clinical settings. Similarly, outcomes of interventions for children with CP have also been measured almost exclusively in clinical settings.’, p. 113.13
They note family support and assistance and peer acceptance are environmental factors that may influence mobility methods used by children with CP. Mobility during daily life requires adaptation to physical and social features and time constraints associated with home, school, and community settings. ‘In certain settings, the constraint of time or speed is an important consideration for mobility. For example, keeping up with peers in school or crossing the street outdoors have time constraints specific to these settings,’, p. 113.13
Palisano et al.’s recommendations are that, ‘Assessment should include consideration of mobility in all settings of a child’s daily life. When direct observation is not practical, information should be gathered from individuals (e.g. parents and teachers) who are familiar with the child’s function in each setting. Physical and social features of the environment should be considered when establishing goals and planning interventions to improve mobility. Interventions may need to be specific to the environmental setting where mobility is restricted.’, p. 119.13
Goldstein and Harper note, ‘Treatment goals will vary depending upon the pathophysiological and biomechanical causes of the deformity and abnormal gait pattern. Goal setting can only be accomplished successfully in light of a true risk-benefit analysis and in the context of realistic expectations on the part of the clinical team, the parent/caregiver(s), and the patient.’, p. 564.14 Knowing treatments are not cures, interventions may enable children to reach certain goals and achieve maximum potential. They report persons with CP often encounter discrimination, being underestimated by teachers, employers, and even family members, with exacerbation as the child undergoes transition from school to adult life.
Social functioning and maturation are also important considerations in developing a treatment strategy for a child. Programs focusing solely on physical outcomes may not account for socialization factors and may in some way adversely affect the child’s overall functional abilities. They recommend the clinical team and parent/caregiver(s) measure the total function of the child and satisfaction when evaluating impact of interventions. Aligning treatment goals and expectations among all parties increases the probability of treatment success.14
Our treatment program is designed to look at multiple functional goals that can be addressed at the same time, with the ultimate goal of increasing the child’s level of independence. It is not thought of simply as a surgical event, but a comprehensive treatment plan for improving independence that is accomplished by teamwork, and surgery is one piece of that plan. The ability to assess the participation dimension through in-clinic questionnaires enhances our ability to plan treatment. The results of this study provide strong evidence that clinicians can accurately assess a child’s participation in the community by collecting health-related quality of life data from the PODCI in the clinic setting. The PODCI proves to be a valuable tool in providing reliable information that can be used to assist in treatment planning for children with CP.
Funding: The United Cerebral Palsy Research and Education Foundation and Shriners Hospitals for Children Clinical Outcomes Study Advisory Board.