کد مقاله | کد نشریه | سال انتشار | مقاله انگلیسی | نسخه تمام متن |
---|---|---|---|---|
6848635 | 621910 | 2015 | 9 صفحه PDF | دانلود رایگان |
عنوان انگلیسی مقاله ISI
Activity and participation in children with neurofibromatosis type 1
ترجمه فارسی عنوان
فعالیت و مشارکت در کودکان مبتلا به نوروفیبروماتوز نوع 1
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کلمات کلیدی
نوروفیبروماتوز نوع 1، فعالیت، مشارکت، ابزار گردآوری داده های خروجی کودکان، ارزیابی کودکان از مشارکت و لذت بردن،
موضوعات مرتبط
علوم زیستی و بیوفناوری
علم عصب شناسی
علوم اعصاب رفتاری
چکیده انگلیسی
We describe activity and participation in children and youth with neurofibromatosis type 1 (NF1), and compared an intervention and control group after a strengthening program using the Pediatric Outcomes Data Collection Instrument (PODCI) and the Children's Assessment of Participation and Enjoyment (CAPE). Questionnaires were filled out by parents at baseline, 12-weeks, and 1-year. The intervention group performed a strengthening program twice a week for ten weeks, followed by a 9-month independent program. Thirty-six participants (18 control, 18 intervention) between the ages of 5- and 18-years (mean 10.6 years, SD 4.6 years) were enrolled, and 34 completed the 1-year assessment. There were significant differences between formal and informal participation (p < 0.0001) in baseline CAPE scores for the entire cohort. At 12 weeks, PODCI upper extremity function improved in intervention and decreased in controls (p = 0.040), while happiness declined in intervention and increased in control (p = 0.003). There were no significant differences between control and intervention groups in any of the CAPE or PODCI change scores from baseline to 1-year. Upper extremity function, sport and physical function, comfort/pain and happiness PODCI scores were lower than normative values. The NF1 cohort had low participation in formal active physical and skill-based activities. The companionship and location dimensions suggest participation occurs with family and other relatives in the home or a relative's home and reflects a pattern of social isolation from peers.
ناشر
Database: Elsevier - ScienceDirect (ساینس دایرکت)
Journal: Research in Developmental Disabilities - Volume 36, January 2015, Pages 213-221
Journal: Research in Developmental Disabilities - Volume 36, January 2015, Pages 213-221
نویسندگان
Barbara A. Johnson, Xiaoming Sheng, Amber S. Perry, David A. Stevenson,