Domains of importance for parents, medical professionals and youth with cerebral palsy considering treatment outcomes

Authors

  • J. N. Vargus-Adams,

    Corresponding author
    1. Cincinnati Children's Hospital Medical Center, University of Cincinnati School of Medicine, Departments of Pediatrics and Physical Medicine and Rehabilitation, Division of Pediatric Rehabilitation and Center for Epidemiology and Biostatistics, and
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  • L. K. Martin

    1. Cincinnati Children's Hospital Medical Center, Division of Pediatric Rehabilitation, Cincinnati, OH, USA
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Jilda N. Vargus-Adams, MD, MSc, Cincinnati Children's Hospital Medical Center, Division of Pediatric Rehabilitation, MLC 4009, 3333 Burnet Avenue, Cincinnati, OH 45229-3039, USA
E-mail: jilda.vargus-adams@cchmc.org

Abstract

Background  The aim of this study was to assess the domains of importance in therapeutic intervention for cerebral palsy (CP) using categories of the International Classification of Functioning, Disability, and Health – Children and Youth Version (ICF-CY).

Methods  A total of 17 youth, 19 parents and 39 medical professionals responded to the open-ended query: ‘What are the things you find most important to consider when you evaluate the effects of an intervention for yourself/your child/your patient with cerebral palsy?’ Surveys were either mailed or conducted on-line. Responses were coded by two reviewers using the ICF-CY and discrepancies were resolved.

Results  Responses were distributed across the ICF-CY domains of Body Functions and Structures, Activities and Participation, and Environmental Factors, as well as non-ICF-CY concepts including quality of life. The most common responses overall were pain, motor function, mobility, community life and public services. Youth identified strength, gait pattern, hand/arm use and use of assistive technologies as priorities whereas parents were concerned with motor function, communication, mobility and provision of public services. Medical professionals listed pain, function, mobility, community life and participation most often.

Conclusions  All surveyed groups indicate a desire to see changes in body functions and structures (pain, mental function, strength, movement), activities and participation (communication, hand/arm use, walking, school, recreation/community life) and quality of life following therapeutic interventions for CP. These results demonstrate the multiple, varied concerns regarding CP across the spectrum of functioning and health.

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