A Collaborative Approach to Decision Making Through Developmental Monitoring to Provide Individualized Services for Children With Cerebral Palsy

In this Perspective, we suggest a process to improve physical and occupational therapists’ and families’ collaboration to provide appropriate, efficient, and effective evidence-based services to improve motor function, self-care performance, and participation in family and recreation activities for children with cerebral palsy (CP). This process is informed by 2 multisite prospective cohort studies (Move & PLAY and On Track). The heterogeneity of children with CP is described, limiting the utility of evidence from randomized controlled trials and systematic reviews to inform service planning for children with CP. An evidence-based alternative using prospective cohort studies that produce knowledge of determinants of outcomes important to children and families and methods for developmental monitoring using longitudinal developmental and reference percentile curves to inform individualized care is suggested. Guiding questions are provided to explore how knowledge of determinants and developmental monitoring can inform family-centered, collaborative, strengths-based, and focused service programs to support early development and function. Although this perspective paper is focused on children with CP, the research approach described for collection of useful information and the clinical method of data use may be helpful for people with other heterogeneous chronic health conditions in which physical and occupational therapists face similar challenges. Physical and occupational therapists face a challenge when attempting to use evidence of effectiveness of interventions to support people with heterogeneous health conditions, such as cerebral palsy (CP). We define CP and describe how variable children with this diagnosis are. We then selectively review published literature that highlights difficulties in using information from randomized controlled trials (RCTs) and systematic reviews to inform service planning for children with CP. We propose an evidence-based alternative using prospective cohort studies that produce knowledge of determinants of outcomes important to children and families and methods for developmental monitoring using longitudinal and reference percentile curves to inform individualized care. We provide guidelines to explore how this evidence can be used to plan family-centered, collaborative, strengths-based services to support development and function. “Cerebral palsy (CP) describes a group of permanent disorders of the development of movement and posture…. often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour, by epilepsy, and by secondary musculoskeletal problems.” 1 p9 Traditionally, children with CP have been described by type of motor disorder or distribution of involvement. Recently, functional classification systems have been identified to be more useful and reliable than systems based on impairments.2 The Gross Motor Function Classification System (GMFCS),3,4 the Manual Ability Classification System (MACS),5 and the Communication Function Classification System (CFCS)6 are 5-level ordinal classification systems to categorize usual performance in gross motor, hand, and communication function in everyday life with evidence supporting their reliability and validity. In all systems, level I represents the highest function and level V the lowest. Together, these systems contribute significantly in understanding the variable manifestation of CP. They also provide enhanced communication among team members (including families), a sharper focus on function, and assistance with both realistic goal setting and intervention planning. Hidecker et al7 were the first to describe the relationships among these 3 systems. The most common profile among 222 children was all being in level I, representing 10% of the sample. They also found GMFCS-II, MACS-II, and CFCS-I to represent 5% of their sample. Our group8 recently replicated this study with 671 children and confirmed that GMFCS-I, MACS-I, and CFCS-I was the most common profile (11%), with 10% occurring in GMFCS-I, MACS-II, and CFCS-I, and 6% in GMFCS-II, MACS-II, and CFCS-I. The remaining 73% of the children were scattered in 69 additional cells, each with a frequency of under 5%, highlighting the heterogeneity of gross motor, hand, and communication functions. Although CP is primarily a motor disorder, individual children also experience a range of associated impairments in body functions and health conditions. In addition to investigating the inter-relationships among the 3 systems, we also determined the number and impact of associated health conditions of selected profiles8 using the Health Conditions Questionnaire.9 Although both the average number and impact of health conditions increased as function was more limited, the range of both indices varied considerably, further highlighting the relative uniqueness of individual children. In additional efforts to categorize children with CP more comprehensively than is possible using the GMFCS, MACS, and CFCS alone, we investigated use of other key features of CP. These features included measures of spasticity, balance, distribution of involvement, strength, range of motion, endurance, and impact of health conditions. We established 5 levels of functioning using 2 techniques: a summative, quintile approach and a cluster analysis.10 In the quintile approach, we simply summed the total scores of all measures, divided the ranked grand total scores into 5 groups of children with successively lower scores, and described the central tendency and variability of each of the 5 groups. Using cluster analysis, children were organized into 5 groups based on commonly occurring clusters of levels of the additional key features. These 2 techniques yielded similar groups of children, both ranked by functional ability. The ranked solution was expected in the summative, quintile approach, as it is inherent in the method used. A ranked solution was not expected when using cluster analysis. Our results differed from results in other groups of children (eg, developmental coordination disorder, in which distinct subgroups of children with different constellations of strengths and relative limitations were identified).11 Although average function decreased from the most to least functional groups, there was significant variability in scores on individual measures within each of the 5 groups, with considerable overlap among groups. This finding, specifically the variability in scores within each group studied, as well as overlap among groups, has been observed by others investigating scores across GMFCS levels.12 These results again highlight the heterogeneity of children with CP. As a result of this preparatory work, we concluded that although it is possible to develop a more comprehensive classification, it was not clinically useful. Instead, we believe that routine comprehensive assessments are essential, with each measure interpreted separately to understand individual children's relative strengths and limitations. Traditionally, therapists look to evidence from RCTs and systematic reviews as evidence of effectiveness of interventions. Novak and colleagues13 conducted a systematic review of systematic reviews of a wide variety of interventions for children with CP. Although they acknowledged CP as a complex and heterogeneous condition, they included any motor subtype, topography, or functional ability level in their analyses. Furthermore, they did not acknowledge the limitations of RCTs for providing useful evidence of effectiveness of interventions for this heterogeneous group of children. Responses to this review were many. Critiques highlighted the heterogeneity of CP, the necessity to include the specific clinical features of the sub-population studied, and the importance of these aspects to clinical decision making about interventions to meet the needs of individual children.14–17 The goal of establishing evidence of treatment efficacy for the whole population of children with CP was viewed as an oversimplification of a very complex health condition.15 Several authors suggested that this complexity requires consideration of details on a case-by-case basis before appropriate interventions could be planned for individual children.18 Similar to our view, several groups indicated their preference for prospective cohort studies to understand factors associated with children's outcomes.16,18,19 Our research has used comprehensive rehabilitation outcomes research,20 which is structured around the World Health Organization's International Classification of Functioning, Disability and Health.21 Comprehensive rehabilitation outcomes research is useful when one has a less uniform group of people (such as CP), when interventions are multidimensional and individualized, and when there are significant personal and environmental influences on outcomes. In their response to the letters to the editor, Novak and colleagues22 acknowledged the limitations of RCTs and supported the use of alternative research designs. Furthermore, they strongly agreed with others17 that “the essential next step for the field is to prioritize the development of in-depth, subgroup-specific, valid and patient-oriented, internationally endorsed clinical guidelines, using rigorous, accepted methodologies and involving appropriate consultation.”22 We believe that our work is situated to contribute to this next step. Our “consultation” has included assembling a skilled and knowledgeable research team, as well as working closely with both front-line physical therapists23 and parents of children with CP.24 As is the case for many chronic health conditions,25 knowledge of prognosis is essential for intervention planning for children with CP. Although CP is a non-progressive condition, functional decline by adulthood has been well reported.26–29 Research has also suggested that a decline in motor function may begin earlier in life. Average developmental patterns of motor function for children have been graphed for all 5 levels of the GMFCS.30 Highest levels of functioning were shown to peak when children are 7 or 8 years old, followed by a decline in motor abilities for children and youth in GMFCS levels III, IV, and V.31 Three goals for early rehabilitation consistently identified by children with CP and their families32,33 are to optimize motor function, prevent the development of secondary conditions or impairments that impact lifelong health, and promote children's participation in their daily lives.20,34 In our approach, we focus on children with CP from the time of diagnosis through elementary school age. Furthermore, we value family-centered care and a collaborative approach focusing on children's developmental strengths and environmental supports through a strengths-based perspective. We perceive prospective cohort studies to provide an alternative to RCTs in providing an evidence base for realistic goal setting and intervention planning for this heterogeneous group of children. 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