Table 3.

Self-management instruments [84, 85]

Name of instrument Citation	Short description: Number of items; age range; type of instrument; subscales	Psychometric evidence: reliability and validity	Recommended use
Spina bifida-specific instrument developed with samples of youth with spina bifida
KKIS-SB Kennedy Krieger Independence Scales-Spina Bifida (KKIS-SB) The Kennedy Krieger Independence Scales-Spina Bifida Version: A Measure of Executive Components of Self-Management (KKIS-SB) [13].	• Twenty-two items. • Caregiver-reported measure of self-care skills for individuals ages 10 and above. • Based on assumption that self-care skills require adequate executive functioning and that other scales do not assess the executive burden of these tasks. • Four response pattern options: – More than 90% of the time – 10–90% of the time – Less than 10% of the time – Not necessary or no opportunity • Two subscales: Initiation of Routines and Prospective Memory. • Initiation of Routines subscale items: – Keep room clean – Finish chores – Catheterize on time – Get out of bed on time – Hygiene on time – Take medication on time • Prospective Memory subscale items: – Arrive at appointments on time – Arrange transportation – Self-examine for skin breakdown – Start bowel program – Perform pressure relief – Write scheduled appointments	Evidence reported [13] • Psychometric analysis with a sample of 122 parents of individuals with spina bifida ages 10–29. Reliability • Internal reliability $\alpha =$ 0.89 • Test-retest not reported Validity • Exploratory factor analysis, reliability and construct validity using BRIEF (Behavior Report Inventory of Executive Function) were conducted. • Factor analysis supported two subscales. • Correlations between KISS-SB initiation of routines subscale and BRIEF summary scales ($r=-$0.031–0.56) as well as five of the 8 BRIEF subscales (inhibit, shift, working memory and monitor) ($r=-$29 to $-$62) support validity of the KKIS-SB. • Age-related changes and correlation with the Adaptive Behavior Assessment System scales also support validity of both KKIS-SB subscales.	• Parent scales are recommended. • Child report version exists but psychometric data have not been published. • Contact developers for more information on child-report KKIS-SB. • KKIS-SB provides a highly-specialized assessment of self-management abilities based on a known area of challenge in individuals with spina bifida (executive functioning).