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临床试验/NCT00876837
NCT00876837已完成不适用

Long-term Outcomes and Life Satisfaction of Adults With Pediatric-Onset Spinal Cord Injuries

Shriners Hospitals for Children1 个研究点 分布在 1 个国家目标入组 514 人开始时间: 1998年3月最近更新:
适应症

试验速览

阶段
不适用
状态
已完成
入组人数
514
试验地点
1
主要终点
medical complications

研究概览

简要总结

The purpose of this study is to assess life satisfaction and long-term outcomes (i.e., medical and psychosocial) of adults who sustained spinal cord injuries (SCI) as children or adolescents.

详细描述

The ultimate goal of rehabilitation for children and adolescents with spinal cord injuries (SCIs) is to assure that they can grow up to have as productive and satisfying lives as their peers. Understanding factors associated with these outcomes of our patients after they have become adults may help to identify interventions and rehabilitation strategies that will optimize long-term outcomes. Long-term studies of adults with pediatric-onset SCI are needed to identify important outcomes, including survival, participation, health status and health-related quality of life, and life-satisfaction. Further, these outcomes need to be compared to population norms. Predictive models of important outcomes will be developed using independent factors, including demographic, impairment, functional limitation, participation, and environmental and personal factors. In addition, the impact of age at injury, upper extremity reconstruction or functional electrical stimulation implants, and the Mitrofanoff procedure on adult outcomes will be assessed. The stability of selected outcomes in comparison to normative and census data will be determined and factors associated with changes in these outcomes will be assessed.

研究设计

研究类型
Observational
观察模型
Cohort
时间视角
Prospective

入排标准

年龄范围
19 Years 至 100 Years(Adult, Older Adult)
性别
All
接受健康志愿者

入选标准

  • Individuals who are 19 years of age and older
  • Were injured at the age of 18 years or younger
  • Received care at Shriners Hospitals for Children in Chicago, Philadelphia, or Northern California

排除标准

  • Non-English speaking individuals due to lack of measures in languages other than English and lack of foreign-speaking research assistants
  • severe brain injury

结局指标

主要结局

medical complications

时间窗: annually

Assessment of medical complications, including pressure ulcers, spasticity, UTIs, hospitalizations

次要结局

  • psychological outcomes(annually)

研究者

申办方类型
Other
责任方
Principal Investigator
主要研究者

Kathy Zebracki

Director of Psychology

Shriners Hospitals for Children

研究点 (1)

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