Understanding the Development of Children with Cerebral Palsy and How Therapy May Affect Patient-Centered Outcomes

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What was the research about?

Cerebral palsy, or CP, is a health problem that starts at birth or in early childhood and affects the nerves and muscles. CP can reduce movement and endurance. Children with CP have different levels of functional ability, or the ability to do everyday activities. Children with CP also develop in different ways as they age.

In this study, therapists assessed more than 700 children with CP. The therapists did this two to five times over two years. The research team then made development charts, which showed how children with CP at different levels of functional ability may develop as they age. The team also looked at the therapy the children received, such as physical, occupational, and speech therapy. This therapy helps children with CP learn to move and do everyday activities. The team wanted to learn how different aspects of therapy were related to the children’s endurance and their taking part in leisure and self-care activities.

What were the results?

Development charts. Overall, the lower a child’s functional ability, the lower the rate and amount of development. The charts show that for most measures, children develop quickly at young ages. Then their development slows.

Therapy. Children with lower functional ability had more therapy sessions. But more sessions didn’t lead to better development.

Aspects of therapy related to better development in endurance and the ability to take part in leisure and self-care activities included therapy in which

• Therapists worked closely with the child’s family
• Parents felt their child’s therapy needs were being met

Aspects of therapy related to better development only in the ability to take part in leisure and self-care activities included therapy with a focus on

• Health and well-being
• Structured play and activities

Who was in the study?

The study included 708 children with CP. The children were between 18 months and 12 years old. They were from four regions in the United States and six regions in Canada.

What did the research team do?

Therapists looked at the children’s balance, alignment of the spine and range of motion, strength, and endurance. Parents also filled out a form about their child’s endurance, other health issues, and ability to take part in leisure and self-care activities. The research team made development charts for each of these measures. The charts showed the average development for children at different levels of functional ability as they aged.

Parents also filled out a form on the aspects of the therapy their child had received. The research team looked at how certain aspects of therapy were related to the children’s endurance and their ability to take part in leisure and self-care activities.

Seven mothers of children with CP gave input during the study.

What were the limits of the study?

Information about therapy services came from parents, not the children’s therapists. The study didn’t look at how effective the services were. Also, the study didn’t compare different services.

How can people use the results?

Families of children with CP, their doctors, and their therapists can use the results to understand how children with CP at different levels of functional ability may develop. However, the results cannot predict the progress of an individual child. Families and doctors can also use the results to talk about what therapy services may be helpful for children with CP.

Objective

(1) To create developmental trajectories for children with cerebral palsy (CP) at different levels of functional ability; (2) To explore associations between parental report of aspects of therapy services and balance, endurance, participation in family and recreational activities, and performance of self-care activities in children with CP

Study Design

Researchers classified the children’s function using the Gross Motor Function Classification System (GMFCS) at the first study visit and again 12 and 24 months later. GMFCS levels range from levels I to V, reflecting mild to severe functional disability, with level V being the most severe. Ninety therapist assessors evaluated children two to five times over two years using standardized measures of balance, range of motion, muscle strength, and endurance. Parents completed questionnaires about their children’s family and recreational activities, performance of self-care activities, and therapy services.

Researchers then created developmental trajectories for each GMFCS level. Researchers also explored associations between parental-reported aspects of therapy services and the children’s balance, endurance, participation in recreational activities, and performance of self-care activities.

Seven mothers of children with CP provided advice during the study.

Results

Developmental trajectories

• Body structure and function. Children with lower functional ability made smaller improvements. For children at all GMFCS levels, range of motion limitations increased linearly to a small extent, and the impact of concomitant health conditions generally remained constant. Strength increased linearly to a small extent for children at GMFCS levels III–IV and decreased linearly slightly for children at level V. For strength in children at GMFCS levels I–II, and for all other measures, children developed quickly up to approximately age five, followed by a slowing of development.
• Family and recreational activities. Children at GMFCS levels I, III, IV, and V showed a rapid increase in participation that plateaued between ages two and four. For children at level II, participation decreased linearly to a small extent during that period.
• Self-care activities. Children at GMFCS levels I–III continually improved from ages 18 months to 12 years, with approximately 60% of development occurring between ages 2 and 5. Children at levels IV and V showed early development that plateaued between ages three and six.

Therapy services

• Amount of services. The amount of therapy services a child received increased as functional limitations increased. However, increases in the amount of services did not relate to greater improvements in study outcomes.
• Associations between development and services. For endurance, participation in family and recreational activities, and performance of self-care activities, therapy services that were family-centered and those in which parents perceived children’s therapy needs as being met were associated with higher development. For participation in family and recreational activities and performance of self-care activities, services with a focus on health and well-being and on structured play and recreation activities were also associated with higher development.

Limitations

The research team did not assign therapy services to participants, thus the study cannot provide definitive statements about the effectiveness of these services. Parental report about the aspects of therapy services received may differ from how therapists would report the services.

Conclusions and Relevance

Therapists can use the trajectories as a guide to discuss prognosis with families of children with CP. However, the charts cannot predict an individual child’s progress. When making therapy decisions, therapists and families may consider the aspects of services that this study found to be associated with higher development.

Future Research Needs

Future research could create developmental trajectories tracking children with CP through young adulthood. Also, research could more closely examine the amount, focus, and goals of services with regard to outcomes across a specified time.