On the Move: Study Measures Physical Function in Children, Young Adults With Trisomy 21

Ann T. Harrington, DPT, PhD, a physical therapist and research scientist in the Trisomy 21 Program, discusses the goals of the Gait and Function in Trisomy 21 Study and answers questions about the research project that measures physical function in children and young adults with trisomy 21.

What is the Gait and Function in Trisomy 21 Study?

The Gait and Function in Trisomy 21 Study (GFITT) is a research project examining strength, balance, physical function and walking patterns in children and young adults, ages 7 to 20 year old, with Down syndrome.

Participants complete a battery of tests and measures during a single session as part of this pilot project funded by the Metabolism, Nutrition and Development Research Affinity Group at The Children’s Hospital of Philadelphia (CHOP). The research team includes CHOP clinicians and researchers.

We plan to use the information gained from this study to describe characteristics of physical function in individuals with Down syndrome and to guide the design of future intervention studies.

How did you become interested in this area of research?

My overall research interest is the promotion of physical fitness in children and adolescents with disabilities resulting from neurological injury, neuromuscular diseases and genetic syndromes.

I have been a physical therapist at CHOP for the past 10 years, and I joined the Trisomy 21/Down Syndrome Clinic team last year. I have really enjoyed my clinical experience with this program, and I am excited about the potential to use some of the knowledge gained from this project to develop health-promotion-based physical fitness interventions to address potential barriers to participation in recreational physical activity for adolescents and young adults with Down syndrome.

How can families participate?

During a single study visit lasting about 2.5 hours, children will have a brief physical examination that includes weight, height, and measurement of arm and waist circumference. We will also measure:

• Short distance speed
• Distance walked in six minutes
• Muscle strength
• Motor skills (balance and coordination)

Parents will be asked to complete questionnaires on family demographic information and the participant’s health and medical history. Families will be provided with the results of the physical function assessment. A modest compensation is provided.

Study visits can be scheduled at CHOP’s Main Campus and at CHOP Care Network Specialty Care Center locations in King of Prussia and Bucks County, PA, and Voorhees, NJ. To schedule a visit, contact me (Dr. Harrington) by email or call 267-426-7324.

Where do you see this work leading?

Information gained from this study may help us design better physical therapy interventions for individuals with Down syndrome. I hope future work will focus on combining health promotion strategies with physical activity interventions to increase patient and caregiver independence with exercise programs — with an overall goal of improving quality of life.

The current project will provide essential baseline information on the variability of these measures, which can help us to determine if we are able to make measurable change with future interventions. This study is also helping to identify which measures may be the best for particular age groups.

Are you working on any other projects for children with Down syndrome?

We also have a research study examining activity participation and enjoyment in children with Down syndrome. This project, which started a few years ago as a research project with former physical therapy resident Lauren B. Sofen, DPT, is designed to provide insight on gender differences and activity preferences in 6- to 13-year-olds with Down syndrome by using a structured interview and a tool called the Children’s Assessment of Participation and Enjoyment.

By identifying preferred activities and motivators for participation — for example being in a group with others vs. independent sports activities — we may be able to design better interventions to motivate physical activity. Families interested in learning more about this project can also contact me.