Pediatric Outcomes Toolbox: Child & Caregiver Participation Measures

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The International Classification of Functioning, Disability and Health (ICF) provides a framework for describing and measuring important aspects of an individual’s health condition. Therapists routinely collect data and identify impairments in body system and function as well as activity limitations for children with movement challenges. Participation is another aspect of functioning that may be a focus of pediatric intervention and should also be measured in ways that are meaningful to children, their families, and the professionals that provide intervention. Your Pediatric Outcomes Toolbox will discuss the measurement of participation in the context of the ICF, review the role of patient-report outcome measures in pediatrics, provide examples of measures of participation, and illustrate best practices in measurement through case examples.

Meet your instructor

Robin Dole

Robin L. Dole, PT, DPT, EdD, PCS, is a professor of physical therapy and prior director of the Institute for Physical Therapy at Widener University. She currently serves as dean of the School of Human Service Professions at Widener. Dr. Dole has been involved in pediatric practice for nearly 30 years, and as an academician…

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Chapters & learning objectives

1. What Is Participation? Why and How Should We Measure It?

Participation is defined in the ICF as involvement in life situations. Children and youth with disabilities may experience barriers to full participation in their life situations at home, school, and the community. Therapy interventions aimed at improving a child or youth’s mobility and movement function should include identification of participation restrictions, measurement of the impact of such restrictions on the child’s daily life, and determination of the extent to which intervention may lessen those restrictions. A variety of measurement types can be helpful in describing and measuring aspects of participation in children and youth. This chapter will focus on the characteristics of child or parent/caregiver report measures and performance-based measures.

2. The Role of Patient-Reported Outcome Measures in Pediatric Therapy

Patient-report outcome measures are becoming more and more prevalent in health care and in physical therapy, specifically. Requirements of payers as well as research evidence to support the psychometric properties of measures to detect meaningful change from the perspective of the patient have driven the increase in the use of these tools. When considering pediatrics, the informant for a patient-report measure may be the child or the child’s parent or caregiver. This chapter will discuss the benefits and challenges of patient-report outcome measures and address considerations for using such measures in pediatric therapy practice.

3. Review of Common Methods for Measuring Participation in Children

This chapter provides an overview of common tests and measures of participation. Tests will be differentiated to show examples that are child- or parent-report measures and those that are performance-based. Psychometric properties for each test, where available, will be discussed, with an emphasis on reliability, validity, and responsiveness to change.

4. Clinical Case Examples: Selection, Administration, Interpretation, Sharing Results

This final chapter will use a case example to illustrate the process of selecting appropriate tests and measures of participation, depending on the child’s age and desired outcome data information. Tips for administration, interpretation, and sharing the results with others will be discussed.

5. Q&A Session

This Q&A session with a pediatric physical therapist will discuss child and caregiver reports regarding participation.

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