Department of Physical Medicine and Rehabilitation, University of Michigan.
Rehabil Psychol. 2017 Aug;62(3):268-275. doi: 10.1037/rep0000157.
PURPOSE/OBJECTIVE: This study was conducted to examine the associations between generic and condition-specific health self-management and levels of adaptive behavior in 2 groups of transition-age youth with congenital neurodevelopmental conditions.
The sample included 43 adolescents/young adults diagnosed with cerebral palsy (CP) and 36 with spina bifida/myelomeningocele (SBM), ages 13-29, mean age 18.96 (4.77), 51.9% female. Health self-management was assessed with the Transition Readiness Assessment Questionnaire (TRAQ) completed by the child, and the Kennedy Krieger Independence Scales-Spina Bifida (KKIS-SB) completed by the parent/guardian. The Adaptive Behavior Assessment System (ABAS-II) completed by the parent/guardian was used to assess levels of adaptive behavior.
There were significant group differences in condition-specific health self-management, including lower KKIS-SB Initiation of Routines and KKIS-SB Prospective Memory scores in the group with SBM. Those differences were no longer significant when scoring was modified to account for item applicability. Group differences in generic health self-management and adaptive behavior were not significant. There were significant differences in the correlations between health self-management instruments and ABAS-II composite scores.
For youth with congenital neurodevelopmental conditions who are in the transition to adulthood, there are important condition-specific self-management needs that are not captured by measuring generic transition readiness or adaptive behavior. Findings highlight the need for clinicians to assess health self-management needs from multiple perspectives, utilizing generic and condition-specific measures that can inform targeted interventions and supports for optimal independence. (PsycINFO Database Record
本研究旨在探讨 2 组先天性神经发育障碍的青少年群体中，一般健康自我管理和特定疾病健康自我管理与适应行为水平之间的关系。
该样本包括 43 名被诊断患有脑瘫（CP）的青少年/成年人和 36 名患有脊柱裂/脊髓脊膜膨出（SBM）的青少年/成年人，年龄在 13-29 岁之间，平均年龄为 18.96（4.77），女性占 51.9%。健康自我管理采用儿童完成的过渡准备评估问卷（TRAQ）和家长/监护人完成的肯尼迪克里格独立量表-脊柱裂（KKIS-SB）进行评估。采用家长/监护人完成的适应行为评估系统（ABAS-II）评估适应行为水平。
在特定疾病健康自我管理方面，两组存在显著差异，包括 SBM 组的 KKIS-SB 日常活动启动和 KKIS-SB 前瞻性记忆得分较低。当对评分进行修改以考虑项目适用性时，这些差异不再显著。一般健康自我管理和适应行为方面的组间差异不显著。健康自我管理工具与 ABAS-II 综合得分之间的相关性存在显著差异。
对于正在向成年过渡的先天性神经发育障碍青少年，存在重要的特定疾病自我管理需求，而通过测量一般过渡准备或适应行为无法捕捉到这些需求。研究结果强调了临床医生从多个角度评估健康自我管理需求的重要性，利用通用和特定疾病的测量方法，可以为最佳独立性提供有针对性的干预和支持。
