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Abstract
Background/Objective. Outcomes-based data, whether used clinically or for research, are difficult to collect in the pediatric spinal cord injury (SCI) population due to a lack of appropriate assessment measures. The purpose of this paper is twofold: to describe the process by which two item pools were developed to evaluate activity performance and participation among children with SCI and to introduce the resultant items specific to pediatric SCI. Methods. The process of item development, including construct development, review of related assessment tools, chart review, item writing and refinement using focus groups, cognitive interviews, and further refinement, was used to create the items pools for activity and participation for children and adolescents with SCI. Results. A total of 347 items were written for the activity performance construct and 61 items were written for the participation construct. Several domains were established within each construct and items were written for both child and parent respondents. Conclusion. The process of detailed item development is the first step in the process of developing an outcomes instrument for children and adolescents with SCI to assess activity performance and participation. The items are representative of pediatric SCI because they address areas specific to children and adolescents with SCI such as wheeled mobility, upper extremity function with adaptive equipment, role performance, and socialization. After testing these items in calibration studies, we will determine if these items can be developed into effective computer-adaptive testing applications.
Highlights
Collecting routine functional outcomes in children with spinal cord injury (SCI) has significant practical implications, as health care providers, social agencies, and school systems have a need to know if children are progressing, regressing, or maintaining their functional levels
We have recently demonstrated the feasibility of building computer-adaptive testing (CAT) platforms for a successful clinical trial for children with Lysosomal storage disease [20], for monitoring children enrolled in inpatient and outpatient physical rehabilitation programs [21], and for evaluating children at the point-ofcare in a busy orthopedic spine practice [22]
A final consensus focus group meeting occurred in order to give any final feedback and narrow the total number of items for each domain. These items were again reviewed by 2 physical therapists and 1 occupational therapist and final refinements were made. This iterative item development process resulted in a pool of 347 items for the activity performance and participation constructs each with domains and some subdomains (Figure 2)
Summary
Collecting routine functional outcomes in children with spinal cord injury (SCI) has significant practical implications, as health care providers, social agencies, and school systems have a need to know if children are progressing, regressing, or maintaining their functional levels. The ability to monitor children over time is essential to ensure that children and adolescents with SCI are meeting developmental milestones and achieving social role expectations, and to assist with determining the need for services from rehabilitation facilities and community and education-based agencies [1]. Assessments for adults with SCI are available and often used clinically; they may be developmentally inappropriate for children. Nearly 36% of patient with paraplegia have a ceiling effect (highest possible score) at rehabilitation hospital discharge, and 75% of patients with paraplegia have a ceiling effect on the motor FIM at 3-years post-SCI. In our own published work [6], we demonstrated that the FIM was insensitive to clinically meaningful changes following upper extremity tendon transfers in children with SCI
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