Validity of computer adaptive tests of daily routines for youth with spinal cord injury.

OBJECTIVE: To evaluate the accuracy of computer adaptive tests (CATs) of daily routines for child- and parent-reported outcomes following pediatric spinal cord injury (SCI) and to evaluate the validity of the scales. METHODS: One hundred ninety-six daily routine items were administered to 381 youths and 322 parents. Pearson correlations, intraclass correlation coefficients (ICC), and 95% confidence intervals (CI) were calculated to evaluate the accuracy of simulated 5-item, 10-item, and 15-item CATs against the full-item banks and to evaluate concurrent validity. Independent samples t tests and analysis of variance were used to evaluate the ability of the daily routine scales to discriminate between children with tetraplegia and paraplegia and among 5 motor groups. RESULTS: ICC and 95% CI demonstrated that simulated 5-, 10-, and 15-item CATs accurately represented the full-item banks for both child- and parent-report scales. The daily routine scales demonstrated discriminative validity, except between 2 motor groups of children with paraplegia. Concurrent validity of the daily routine scales was demonstrated through significant relationships with the FIM scores. CONCLUSION: Child- and parent-reported outcomes of daily routines can be obtained using CATs with the same relative precision of a full-item bank. Five-item, 10-item, and 15-item CATs have discriminative and concurrent validity.

Cerebral activation during the test of spinal cord injury severity in children: an FMRI methodological study.

BACKGROUND: The International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI) are internationally accepted to determine and classify the extent of motor and sensory impairment along with severity (ASIA Impairment Scale [AIS]) following spinal cord injury (SCI). The anorectal examination is a component of the ISNCSCI that determines injury severity. There is a void in the health care literature on the validity of the anorectal examination as an indication of SCI severity. OBJECTIVE: To validate the use of functional magnetic resonance imagining (fMRI) for the purpose of classifying the severity of SCI in children. METHODS: Seventeen patients, with the average age of 14.3 years, underwent 1 complete ISNCSCI examination. Subjects also underwent the anorectal portion of this exam while fMRI data were collected using a 3.0 Tesla Siemens Verio Scanner. Cortical areas of activation were analyzed for possible differences of cortical involvement between complete (AIS A) and incomplete (AIS B, C, and D) SCI subjects. Anxiety/anticipation of the test was also assessed. RESULTS: This study established an fMRI imaging protocol that captures the cortical locations and intensity of activation during the test of sacral sparing. In addition to developing the data acquisition protocol, we also established the postacquisition preprocessing and statistical analysis parameters using SPM8. CONCLUSION: Preliminary findings indicate that fMRI is a useful tool in evaluating the validity of the anorectal examination in determining SCI severity. Assessment of which cortical regions are activated during the testing procedure provides an indication of which pathways are transmitting information to the brain.

Recommendations for mobility in children with spinal cord injury.

BACKGROUND: Mobility is an important aspect of the rehabilitation of children with spinal cord injury (SCI), is a necessary component of life, and is critical in a child's development. Depending upon the individual's age and degree of neurological impairment, the nature of mobility may vary. OBJECTIVES: The objective of this article is to establish recommendations surrounding the selection of mobility for children with SCI. METHODS: Extensive literature review and multidisciplinary peer review. RESULTS: Types of mobility including power, manual, upright, and community are discussed, and recommendations are made based on medical necessity, neurological level, ASIA Impairment Scale score, and developmental considerations and challenges. CONCLUSION: Mobility is critical for proper development to occur in the pediatric population, and it may be challenging to make recommendations for mobility in children with SCI. It is essential for clinicians providing care to children with SCI to address mobility in a comprehensive and longitudinal manner across the children's environments.

Relationship between neurological injury and patterns of upright mobility in children with spinal cord injury.

BACKGROUND: The predictors and patterns of upright mobility in children with a spinal cord injury (SCI) are poorly understood. OBJECTIVE: The objective of this study was to develop a classification system that measures children's ability to integrate ambulation into activities of daily living (ADLs) and to examine upright mobility patterns as a function of their score and classification on the International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI) exam. METHODS: This is a cross-sectional, multicenter study that used a convenience sample of subjects who were participating in a larger study on the reliability of the ISNCSCI. A total of 183 patients between 5 and 21 years old were included in this study. Patients were asked if they had participated in upright mobility in the last month and, if so, in what environment and with what type of bracing. Patients were then categorized into 4 groups: primary ambulators (PrimA), unplanned ambulators (UnPA), planned ambulators (PlanA), and nonambulators. RESULTS: Multivariate analyses found that only lower extremity strength predicted being a PrimA, whereas being an UnPA was predicted by both lower extremity strength and lack of preservation of S45 pinprick sensation. PlanA was only associated with upper extremity strength. CONCLUSIONS: This study introduced a classification system based on the ability of children with SCI to integrate upright mobility into their ADLs. Similar to adults, lower extremity strength was a strong predictor of independent mobility (PrimA and UnPA). Lack of pinprick predicted unplanned ambulation, but not being a PrimA. Finally, upper extremity strength was a predictor for planned ambulation.

Pilot study of reliability and validity of the Walking Index for Spinal Cord Injury II (WISCI-II) in children and adolescents with spinal cord injury.

OBJECTIVE: The objective of this study was twofold: 1) to evaluate the reliability of the Walking Index for Spinal Cord Injury II (WISCI-II) and Spinal Cord Independence Measure (SCIM) indoor mobility item (#12) when used with children with spinal cord injury (SCI) and 2) to examine the concurrent validity between the WISCI-II and the SCIM indoor mobility item in children with SCI. METHODS: A convenience sample of 10 children with SCI between 4-16 years of age was recruited to complete 2 videotaped trials of ambulation for 10 meters. Six licensed physical therapists trained in the use of the WISCI-II and SCIM served as raters; each rater independently scored the WISCI-II and SCIM indoor mobility item for each of the subjects' two trials by reviewing the videotape. The viewing and scoring of Trial 1 and Trial 2 were separated by at least 3 weeks. Inter- and intra-rater reliability was calculated using Intraclass Correlation Coefficients (ICC) and 95% Confidence Intervals (CI). Concurrent validity was evaluated using the Spearman Correlation Coefficient (r_{s}). RESULTS: Intra-rater and inter-rater reliability of repeated WISCI-II scores was high (ICC=0.98, CI=0.95-0.99; ICC=0.97, CI=0.96-0.99, respectively). Intra- and inter-rater reliability for the SCIM mobility score was equally high (ICC=0.96, CI=0.95-0.98, ICC=0.97, CI=0.95-0.98). There was strong correlation between WISCI-II scores and the SCIM indoor mobility item (r_{s}=0.99). CONCLUSION: In this sample of 10 children and six trained raters, intra- and inter-rater reliability of WISCI-II scores and the SCIM mobility indoors scores was high, providing preliminary indication for their utility with children. The high correlation between the WISCI-II and SCIM mobility item further supports concurrent validity.

Cognitive testing of the spinal appearance questionnaire with typically developing youth and youth with idiopathic scoliosis.

BACKGROUND: The Spinal Appearance Questionnaire (SAQ) underwent initial psychometric studies, which suggested good reliability and discriminative ability. Although the SAQ is used as a self report of appearance, our center was concerned about its use with youth owing to complex words and vague questions. We conducted this cross-sectional study to evaluate the readability, comprehension, and interpretation of items on the SAQ. METHODS: Cognitive interview methodology of 76 youths (8 to 16 y; average age 13) included 31 with scoliosis and 45 typically developing. Subjects were required to read each SAQ item and think aloud to capture cognitive processes about the items and responses. Interviews were audiotaped and transcribed verbatim. Problems were categorized and frequencies for each category were calculated. RESULTS: There were reading and comprehension problems and problems understanding the illustration with every written and pictorial SAQ item, respectively. The percent of subjects who encountered at least one problem ranged from 16% to 96%. Subjects had difficulty with understanding the intent of every SAQ item and with understanding the meaning of specific words such as "prominence" and "flank." The pictorial illustrations for items 2 and 3 were problematic for 58% and 49% of subjects, respectively. The illustrations of the lungs (item 4) and hips (items 4 and 5) were problematic for 42% and 27% of subjects, respectively. These results were consistent regardless of age or diagnoses. CONCLUSION: This study does not support the use of the SAQ as currently used with youth owing to use of complex medical words, vague questions, difficult illustrations, and various interpretations of the intent of many of the items. LEVEL OF EVIDENCE: Not applicable (not an intervention study).

Children's and parents' perspectives about activity performance and participation after spinal cord injury: initial development of a patient-reported outcome measure.

OBJECTIVE: To report on a cognitive testing study on newly constructed items designed to evaluate client-reported outcomes of activity performance and participation after spinal cord injury (SCI). METHOD: Thirty-three children with SCI and 13 caregivers participated in cognitive testing interviews. Open-ended questions were used to gain a better understanding of activity performance and participation. The interviews were transcribed verbatim. A thematic analysis was carried out independently by 2 researchers, and key sentences and phrases from both analyses were merged. RESULTS: Four themes were defined: (1) apprehension related to activity performance and participation, (2) reference point, (3) missing out, and (4) autonomy. CONCLUSION: Insight into children's and caregivers' perspectives provided important information that helped refine the wording of test items and response scales. The theme of autonomy provided a stronger catalyst to solidify items for both child- and parent-reported outcomes. This study further validated the complexity of the construct of participation.

Children's reports of activity and participation after sustaining a spinal cord injury: a cognitive interviewing study.

OBJECTIVE: To evaluate the readability, comprehension and response processes of test items designed to measure activity performance and participation by children with spinal cord injury (SCI). METHODS: Eleven parents and 33 children participated. Descriptive statistics were used to calculate frequency of problems based on age, grade, domain and response scale. Agreement was evaluated by weighted kappa coefficient values. RESULTS: Most (54%) of the problems were due to reading/comprehension, with the majority by children 8 years of age or younger (56%) who had not completed 2nd grade (51%). Agreement between child-parent reports ranged from poor-good, with strongest agreement for mobility items and weak agreement for chores, self-care and participation. CONCLUSION: Children with SCI 8 years of age and older who have competed 2nd grade are able to read, understand and respond to items associated with activity performance and participation.

A pilot study of observational motor assessment in infants and toddlers with spinal cord injury.

PURPOSE: To examine the reliability of an observational movement assessment in infants and children with spinal cord injury (SCI) by evaluating interrater agreement of joint actions assessed in the International Standards for Neurological Classification of Spinal Cord Injury using the Active Movement Scale testing technique and scoring criteria. METHODS: A series of 5 consecutive children with SCI aged 12 months to 4 years were enrolled in this pilot study to evaluate interrater agreement of observational movement. RESULTS: There was high agreement of examination scores for unimpaired muscles and completely paralyzed muscles in strength comparisons between the 2 examiners. There was much less agreement of examination scores of partially intact muscles. CONCLUSION: Observational movement assessment may be one component of assessing motor function in infants and toddlers with SCI, but additional work must be done.

Development of items designed to evaluate activity performance and participation in children and adolescents with spinal cord injury.

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.

Discrepancy between severity obtained from examination and classification conducted by experienced examiners and classifiers and documented severity in paediatric spinal cord injury.

OBJECTIVE: The International Standards for Neurological Classification of Spinal Cord Injury (ISCSCI) motor and sensory examinations provides a mechanism for severity classification via the American Spinal Injury Association Impairment Scale (AIS). The purpose of this study is to explore agreement between reported severity in medical charts to severity determine via the International Standards examination and classification by trained examiners and classifiers. METHODS: The agreement between severities from ISCSCI classification from experienced classifiers for all subjects was compared to severities from medical records using percentage agreement and the kappa statistic. RESULTS: Severity classification between ISCSCI and medical record documentation was assessed for agreement in 157 subject examinations. Among the five medical records source documentation, agreement with the study ISCSCI classification on injury severity classification ranged from poor to high. CONCLUSION: The implication in this study provides justification for clinical practice guidelines and better documentation policy to improve documentation of injury severity.

Utilizing research in wheelchair and seating selection and configuration for children with injury/dysfunction of the spinal cord.

OBJECTIVE: To determine how research regarding wheelchair and seating selection and configuration could be applied to the pediatric population with spinal cord injury (SCI) and dysfunction. METHODS: Extensive literature reviews were completed on (a) powered mobility options and age-appropriateness for training; (b) manual wheelchair configuration, pushrim biomechanics, and propulsion ergonomics; and (c) cushion selection and use of pressure-mapping devices. The findings in the literature review then were compared with clinical observations from Shriners Hospitals for Children, Philadelphia's Seating and Wheelchair Clinic. RESULTS/DISCUSSION: A significant amount of research is published on propulsion ergonomics and pushrim biomechanics in adults with SCI. However, this literature review noted that there was limited research available on cushion selection and power mobility configuration. Many of the conclusions drawn from these publications are applied to pediatric patients and used during the decision-making process of wheelchair and cushion selection. However, it is critical to tailor the assessment to the pediatric population to meet their medical and functional needs. CONCLUSION: Although some of the findings can be correlated to the pediatric population, there is a lack of research on wheelchair and seating selection and configuration as it specifically relates to the young person with SCI and dysfunction. Future studies need to be completed.