Feasibility and Effectiveness of an Individualized 12-week 'Uptime' Participation Intervention (U-PART) in Girls and Women With Rett Syndrome
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 14
- 试验地点
- 2
- 主要终点
- Stepwatch Activity Monitor
研究概览
简要总结
The aim of the study is to evaluate the feasibility and health-related effects of an individualized 12wk 'uptime' participation intervention in girls and women with Rett syndrome. Girls and women above 5 years of age with Rett syndrome and a confirmed MECP2 mutation will be included. Each individual program focuses on participation in enjoyable activities to promote 'uptime' in home, school/day center and community settings. Primary outcomes are sedentary time and daily steps. Secondary outcomes are gross motor skills, walking capacity, quality of life and participation-level goals. Outcomes are evaluated on four occasions: at baseline and after a 6-week interval, immediately following the 12-week intervention program and 12 weeks after the intervention program.
研究设计
- 研究类型
- Interventional
- 分配方式
- Na
- 干预模型
- Single Group
- 主要目的
- Other
- 盲法
- None
入排标准
- 年龄范围
- 5 Years 至 —（Child, Adult, Older Adult）
- 性别
- Female
- 接受健康志愿者
- 否
入选标准
- •Girls and women above 5 years of age with Rett syndrome and a confirmed MECP2 mutation
- •Hoffer ambulation scale levels I-IV
排除标准
- •Girls and women who have undergone orthopedic surgery in the lower extremities within the last 6 months
- •Girls and women who have undergone spinal fusion within the last 12 months
研究组 & 干预措施
UPART intervention group
A 1-group pretest-posttest design was conducted. Outcomes were evaluated on four occasions; twice during baseline separated by six weeks and immediately following a 12-week 'uptime' participation intervention and after a further 12 weeks (follow-up).
干预措施: 'Uptime' participation (Other)
结局指标
主要结局
Stepwatch Activity Monitor
时间窗: Assessed four times; twice at baseline; once after the 12 week intervention and once after a further 12 week follow-up
Change in daily step count
ActivPAL
时间窗: Assessed four times; twice at baseline; once after the 12 week intervention and once after a further 12 week follow-up
Change in sedentary time
次要结局
- Rett Syndrome Gross Motor Scale(Assessed four times; twice at baseline; once after the 12 week intervention and once after a further 12 week follow-up)
- 2 minute walk test(Assessed four times; twice at baseline; once after the 12 week intervention and once after a further 12 week follow-up)
- Goal attainment scaling(Assessed twice; at baseline and after the 12 week intervention)
- Quality of Life Inventory - Disability, questionnaire(Assessed four times; twice at baseline; once after the 12 week intervention and once after a further 12 week follow-up)
研究者
Michelle Stahlhut
Research physiotherapist
Rigshospitalet, Denmark