Journal article
The Kennedy Krieger Independence Scales-Sickle Cell Disease: Executive Components of Transition Readiness
Rehabilitation psychology, v 62(3), pp 249-257
Aug 2017
PMID: 28836806
Featured in Collection : UN Sustainable Development Goals @ Drexel
Abstract
Purpose/Objective: Youth with sickle cell disease (SCD) are at an increased risk for executive dysfunction and simultaneously have increased self-management needs compared to typical adolescents. This unique combination may contribute, in part, to difficulties during transition to young adulthood. Current measures assessing adaptive skills do not assess the executive components (e.g., initiation, prospective memory) of SCD-related self-care tasks. Modeled on the KKIS-Spina Bifida (Jacobson et al., 2013), the Kennedy Krieger Independence Scales-Sickle Cell Disease (KKIS-SCD) is a new caregiver-report measure that assesses independence with self-management of SCD-specific demands as well as routine daily activities in adolescents with SCD. Research Method/Design: Thirty-three youth with SCD and their caregivers participated in this preliminary validation study examining the construct validity of the KKIS-SCD total and composite scores (Initiation of Routines, Prospective Memory) and exploring relationships of this measure with intellectual functioning, demographic factors, illness severity, and age. Results: The KKIS-SCD exhibited generally good internal consistency (Cronbach's alpha = .733 to .803), and demonstrated evidence for construct and discriminant validity when compared to an existing measure of adaptive function. The KKIS-SCD was significantly associated with caregiver-report of executive behaviors but not with intellectual functioning, demographic factors, illness severity, or age. Conclusions/Implications: Results provide preliminary support for the KKIS-SCD as a reliable and valid tool for the assessment of executive components of self-care management skills for youth with SCD. Identifying specific weaknesses in executive function related to self-care management skills might assist in guiding intervention and individualizing transition planning in these at-risk youth.
Impact and Implications
As the number of individuals with SCD living into young adulthood and beyond increases with medical advancements, so has the field's interest in these individuals' successful transition to adulthood. However, the impact of the neurocognitive weaknesses commonly observed in individuals with SCD on the acquisition of self-management competencies is not well understood. Individuals with SCD often present with executive dysfunction, which can negatively affect their competence and independence with initiation and completion of medical self-care and other tasks. This study introduces a new measure (KKIS-SCD) designed to address the inherent executive components of both typical self-care tasks and disease-specific medical self-care tasks in youth with SCD. The KKIS-SCD can be used as a transition-readiness screening tool to identify those individuals who may be at risk for difficulty achieving independence in self-management secondary to problems with initiation and/or prospective memory, increasing risk for unsuccessful transition. Identifying targets for intervention holds potential to improve transition independence and competence.
Metrics
Details
- Title
- The Kennedy Krieger Independence Scales-Sickle Cell Disease: Executive Components of Transition Readiness
- Creators
- Kelly E. Jones - Kennedy Krieger InstituteLisa A. Jacobson - Kennedy Krieger InstituteReem A. Tarazi - Drexel University
- Contributors
- Jacqueline N Kaufman (Editor)Sarah Lahey (Editor)Stephen T Wegener (Editor)Beth S Slomine (Editor)Dawn M Ehde (Editor)
- Publication Details
- Rehabilitation psychology, v 62(3), pp 249-257
- Publisher
- American Psychological Association
- Resource Type
- Journal article
- Language
- English
- Academic Unit
- Psychiatry
- Web of Science ID
- WOS:000423046900004
- Scopus ID
- 2-s2.0-85028345511
- Other Identifier
- 991021897412804721
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InCites Highlights
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- Collaboration types
- Domestic collaboration
- Web of Science research areas
- Psychology, Clinical
- Rehabilitation