Validation of the Kennedy Independence Scales - Spina Bifida Version (KIS-SB)

Question: Children and adolescents with histories of surgically corrected myelomenigocele and shunted hydrocephalus (MMH) are expected to perform several medical self-care competencies to prevent health complications and life-threatening complications. Due to medically-related cognitive deficits, children and adolescents with MMH often have difficulty safely assuming sole responsibility for initiating and performing these self-care competencies (e.g., routine self-catherization). The Kennedy Independence Scales: Spina Bifida Version (KIS-SB; Zabel et al., 2003) was developed to help determine time points in development at which most parents of children and adolescents with MMH believe their children are capable of performing these skills without prompting or reminders. Development of this type of instrument will provide information useful for treatment and independence planning.

In this study, we will explore the convergent and discriminant validity of the KIS-SB in adolescents and young adults with MMH by administering the KIS-SB Parent Form along with other commercially available parent ratings forms assessing general adaptive functioning (Adaptive Behavior Assessment System - Parent Form; ABAS-PF; Harrison, & Oakland, 2000) and executive functions (Behavior Rating Inventory of Executive Functions - Parent Form; BRIEF-PF; Gioia, Isquith, Guy, & Kenworthy, 2000). Data will also be collected from two comparison groups of adolescents with either spinal cord injury (SCI) or acute transverse myelitis (ATM) who present with medically-related self-care competencies similar to those presented to patients with MMH, but who are not thought to have cognitive deficits that would compromise their ability to complete their self-care. We will examine developmental trends concerning the maturation of these self-care competencies, and will compare these trends in a group of children and adolescents with cognitive deficits (MMH) and groups without cognitive deficits (SCI and ATM). Doing so will assist in setting expectations concerning when children with MMH should assume responsibility for these medical self-care competencies.