The spinal cord independence measure (SCIM)-III self report for youth

Abstract

Study design: The items and response scales of the Spinal Cord Independence Measure (SCIM-III) self report (SR) were exposed to formal cognitive testing with children with SCI, and in parallel a survey using the modified Delphi Technique was conducted to engage content experts in an iterative critical review of the SCIM-III SR. Objectives: To evaluate the validity of the SCIM-III SR for pediatric utilization. Setting: United States of America. Methods: Formal cognitive testing was conducted with 17 youths with SCI and required them to read and answer each SCIM-III SR item aloud. Think aloud methodology was used to record details about how youths understood and interpreted items and why they selected a given response. The interviews were audiotaped and transcribed verbatim. Content analysis focused on identifying words that children could not read or understand. In parallel, the Modified Delphi Technique engaged expert therapists to critically review the SCIM-III SR for pediatric utilization. Results: Every SCIM-III SR item and response scale required modification before children were able to read, understand and respond to them. Youth encountered difficulties because of vague terms, medical jargon and complex words and phrases. Three iterative Delphi rounds were required before achieving 80% agreement that items and response scales were written well for children. Conclusion: Our findings informed modifications to every SCIM-III SR item and response scale, producing a pediatric version of the tool that we formally refer to as the SCIM-III SR-Youth (SCIM-III SR-Y).

The International Spinal Cord Injury Pediatric Activity and Participation Basic Data Set

“…The data set can be administered through an interview, or by self-report (completing it via paper/pencil without an interviewer). Based on previous cognitive interviewing studies including two that were conducted on the SCIM-III SR-Y [18] and PMoP [27], it is expected that children 8 years of age and older will be able to self-report and respond to variables on the International SCI Pediatric A&P Data Set independently, and for children younger than 8, a parent or caregiver proxy will respond on their child's behalf. As seen in clinical practice, parent or caregiver report may be used in combination with child report (in children 8-12 years of age) or be supplemental to child report (children 13-14 years of age).…”

“…As shown in Table 1, the International SCI Pediatric A&P Basic Data Set contain domains that are similar to the domains on the adult A&P Basic Data Set, however the variables, variable descriptors, and/or metrics differ. For instance, the ADL variables in both data sets record information about level of independence in mobility, dressing, feeding, and toileting activities, however the description for the pediatric variables and coding metrics are adopted from the SCIM-III SR-Y [18]. The ADL variables in the International SCI Pediatric A&P Basic Set can be classified within the Mobility (d4) and Self-care (d5) domains of the International Classification of Disability for Children and Youth (ICF-CY) [28].…”

“…Existing instruments for measurement of pediatric activity and participation [13][14][15][16][17][18][19][20][21][22][23][24][25] were reviewed from which an initial draft data set was developed. The initial draft contained three domains, activities of daily living (ADLs), physical activities, and participation, comprised of items adapted from The Spinal Cord Independence Measure Self-Report for Youth (SCIM-III SR-Y) [18], the Physical Activity Questionnaire for Older Children (PAQ-C) [16,24], and the Pediatric Measure of Participation short forms [25]. Because an International SCI Education Basic Data Set [26] was being developed in parallel to the development of the International SCI Pediatric Activity and Participation, school participation variables were not included on the A&P data set.…”

“…A 4-week recall is used for the ADL variables; the 4-week recall is also used for the existing adult International SCI A&P Basic Data set. The ADL variables were obtained from the SCIM-III SR-Y [18]. The SCIM-III SR-Y was developed based on cognitive interview studies on the widely-implemented SCIM-III [36,37] to evaluate level of self-reported independence by children with SCI.…”

SCIM III (Spinal Cord Independence Measure version III): reliability of assessment by interview and comparison with assessment by observation

“…It is a better option for individual assessments, because the correction of the scoring deviation that can be applied to the interview version cannot be applied to the self-reported versions of SCIM III, which have not been tested for total agreement between raters, and the accuracy of which in assessing the daily performance of individual SCL patients for clinical purposes is therefore unknown. [18][19][20][21][22][23] Both versions were found reliable for group assessment, and the use of the original SCIM III form in the interview version is an additional advantage of the interview version, because it assesses some important tasks that the self-reported SCIM III versions in current use fail to properly assess. This applies, for example, to the bladder management item, which can be assessed accurately in many patients instructed to follow their bladder capacity and residual urine volume, either by measurements of voided urine before and after intermittent catheterization or by ultrasound examination, performed at the clinic from time to time.…”