Msall Michael E, Tremont Michelle R
Child Development Center, Hasbro Children's and Rhode Island Hospitals Brown Medical School, Providence, Rhode Island 02903, USA.
Ment Retard Dev Disabil Res Rev. 2002;8(4):258-72. doi: 10.1002/mrdd.10046.
Our purpose was to describe functional outcomes in essential activities in preschool, school-age, and adolescent children who were born very (<32 weeks gestation) and extremely (<28 weeks gestation) prematurely. Very low birth weight (VLBW; 1000-1499 g), or extremely low birth weight (ELBW;<1000 g) populations are the focus of our analysis. We describe models of disablement and enablement for specifying the complexity of childhood outcomes using a framework of pathophysiology, impairment, functional limitation and functional strengths, disability in social roles and social participation, societal limitations and environmental facilitators. Representative early childhood, preschool, school-age, and adolescent studies were examined in terms of describing children's functional strengths and challenges after VLBW and ELBW survival. In early childhood, disability was assessed by diagnosing neurosensory impairments and delays on developmental testing. Instruments for measuring functional status in essential activities of self-care, mobility, communication and learning are described. Rates of neurosensory disability in the first three years among recent ELBW survivors ranged from 9-26% for cerebral palsy, 1-15% for blindness, 0-9% for deafness, and 6-42% for evolving cognitive disability (MDI <70). Rates of preschool functional limitation were 5-27% motor, 5-30% self-care, and 5-22% communicative. Rates of school-age functional educational disabilities exceeded 50%. Rates of adolescent activity limitation were 13-32% and vocational limitations were 27-71%. By examining the functional strengths and challenges of children with major neurodevelopmental impairments after very or extremely preterm birth, we can examine causal pathways that lessen the risk of severe functional disability. Among children with mild to moderate disability, we can enhance functional outcomes, optimize community participation, and provide quality family supports. In order to assess the changing outcomes of this vulnerable population of survivors, combinations of clinical and survey based methodologies are required.
我们的目的是描述早产极早（孕周<28周）和早产非常早（孕周<32周）的学龄前、学龄期及青少年儿童在基本活动中的功能结局。极低出生体重（VLBW；1000 - 1499克）或超低出生体重（ELBW；<1000克）人群是我们分析的重点。我们使用病理生理学、损伤、功能受限和功能优势、社会角色和社会参与方面的残疾、社会限制和环境促进因素框架，描述致残和赋能模型，以明确儿童结局的复杂性。我们从描述极低出生体重和超低出生体重儿存活后的儿童功能优势和挑战方面，对具有代表性的幼儿期、学龄前、学龄期及青少年研究进行了考察。在幼儿期，通过诊断神经感觉损伤和发育测试延迟来评估残疾情况。文中描述了用于测量自我护理、移动、沟通和学习等基本活动中功能状态的工具。近期超低出生体重儿存活者在出生后前三年中，脑瘫导致的神经感觉残疾发生率为9% - 26%，失明为1% - 15%，失聪为0% - 9%，逐渐发展的认知残疾（MDI<70）为6% - 42%。学龄前功能受限发生率为运动方面5% - 27%，自我护理方面5% - 30%，沟通方面5% - 22%。学龄期功能性教育残疾发生率超过50%。青少年活动受限发生率为13% - 32%，职业受限发生率为27% - 71%。通过研究极早或极早产出生后患有严重神经发育损伤儿童的功能优势和挑战，我们可以研究降低严重功能残疾风险的因果途径。对于轻度至中度残疾儿童，我们可以改善功能结局，优化社区参与，并提供优质的家庭支持。为了评估这一脆弱幸存者群体不断变化的结局，需要结合临床和基于调查的方法。
