Physical, Cognitive, and Psychosocial Predictors of Functional Disability and Health-Related Quality of Life in Adolescents with Neurofibromatosis-1

Physical, Cognitive, and Psychosocial Predictors of Functional Disability and Health-Related Quality of Life in Adolescents with Neurofibromatosis-1
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DOI:
10.1155/2012/975364
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发表时间:
2012-01-01
影响因子:
--
通讯作者:
Klein-Tasman, Bonita P.
Klein-Tasman, Bonita P.
中科院分区:
其他
文献类型:
--
作者:
Garwood, Molly M.;Bernacki, Jessica M.;Klein-Tasman, Bonita P.

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客观的。旨在检查诊断为神经纤维瘤病-1 的青少年的生活质量 (HRQOL) 和功能障碍 (FD) 的身体、认知和社会情感预测因素。方法。参与者是 27 名被诊断患有 NF-1 的青少年,他们是通过中西部一家大型儿童医院的 NF-1 专科诊所招募的。青少年的认知功能、疼痛、FD、HRQOL 以及社交和情感功能的测量值是通过相应的家长测量值获得的。结果。情绪功能显着预测青少年报告和父母报告的 HRQOL,而疼痛天数显着预测青少年报告的 FD。结论。 NF-1 是一种复杂的疾病。对疾病总体影响的测量涉及 NF-1 对日常生活影响的不同方面。 HRQOL 等总体结果似乎尤其受情绪功能的影响,而 FD 等结果似乎受 NF-1 的身体/有机方面的影响。
Objective. To examine physical, cognitive, and social-emotional predictors of quality of life (HRQOL) and functional disability (FD) in adolescents diagnosed with Neurofibromatosis-1. Methods. Participants were twenty-seven adolescents with a diagnosis of NF-1 who were recruited through an NF-1 specialty clinic at a large Midwestern children's hospital. Measurements of the adolescents' cognitive functioning, pain, FD, HRQOL, and social and emotional functioning were obtained with corresponding parent measures. Results. Emotional functioning significantly predicted youth-reported and parent-reported HRQOL, whereas days of pain significantly predicted youth-reported FD. Conclusions. NF-1 is a complex disease. Measurements of the overall impact of the disease tap into different aspects of the effects of NF-1 on daily life. Global outcomes such as HRQOL appear to be influenced especially by emotional functioning, whereas outcomes such as FD appear to be influenced by the physical/organic aspects of NF-1.