Long-Term Deterioration of Perceived Health and Functioning in Adults With Cerebral Palsy
Long-Term Deterioration of Perceived Health and Functioning in Adults With Cerebral Palsy
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DOI：
10.1016/j.apmr.2017.03.013
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发表时间：
2017-11-01
影响因子：
4.3
通讯作者：
Roebroeck, Marij E.
中科院分区：
文献类型：
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作者：
Benner, Joyce L.;Hilberink, Sander R.;Roebroeck, Marij E.
目的：描述成人脑瘫（CP）患者感知健康、存在健康问题和功能水平的纵向变化。&对位;&对位;设计：前瞻性队列研究。&对位;&对位;设置：参与者的日常环境。&对位;&对位;参与者：49名患有CP的成人（年龄范围：35-45岁；27名[55%]男性；36名[75%]痉挛性），以前在儿科康复护理中已知。&对位;&对位;干预措施：不适用。&对位;&对位;主要结果测量：邮寄问卷由成人或其代理人完成（n=9）。健康结果包括感知健康（改编自36项简短健康调查）和健康问题的存在，如疼痛、严重疲劳（二分法）和功能水平（Barthel指数；行走表现）。&对位;&对位;结果：10年间，担心自己健康的CP成人比例增加（29% ~ 54%，P= 0.008），表示健康问题限制其活动的比例增加（19% ~ 45%，P= 0.002）。在同一时期，大多数成年人继续报告总体健康状况良好（93%-86%；P= 0.148）。一些健康问题的出现随着时间的推移而增加，比如疼痛；严重疲劳是随访中常见的健康问题（32%）。在14年期间，活动能力和自我护理恶化（Barthel指数，17.13 +/- 4.8至16.33 +/- 5.6；P=.007）。步行表现，特别是在室内，下降（83%-71%；P= 0.010）。&对位;&对位;结论：长期来看，成年CP患者的健康状况恶化。最明显的是，感知健康和功能水平下降。疼痛和严重疲劳是成人CP中最常见的健康问题，需要更多的研究来探索CP患者衰老过程中的作用机制。系统的成年CP随访对于及时发现和干预健康问题和功能衰退是必要的。(C) 2017年美国康复医学大会
Objective: To describe longitudinal change in perceived health, presence of health issues, and functional level in adults with cerebral palsy (CP).& para;& para;Design: Prospective cohort study.& para;& para;Setting: Participants' daily environment.& para;& para;Participants: Adults (N=49) with CP (age range, 35-45y; 27 [55%] men; 36 [75%] spastic) formerly known in pediatric rehabilitation care participated.& para;& para;Interventions: Not applicable.& para;& para;Main Outcome Measures: Postal questionnaires were completed by the adults or their proxies (n=9). Health outcomes included perceived health (adapted from the 36-Item Short Form Health Survey) and presence of health issues such as pain, severe fatigue (dichotomized), and functional level (Barthel Index; walking performance).& para;& para;Results: Over a 10-year period, the percentage of adults with CP worrying about their health increased (29%-54%; P=.008) and those indicating that health problems limit their activities increased (19%-45%; P = .002). In the same period, most adults continued to report good general health (93%-86%; P=.148). Presence of some health issues increased over time, such as pain; severe fatigue was a common health issue at follow-up (32%). Over a 14-year period, mobility and self-care deteriorated (Barthel Index, 17.13 +/- 4.8 to 16.33 +/- 5.6; P=.007). Walking perfor mance, specifically indoors, declined (83%-71%; P=.010).& para;& para;Conclusions: Adults with CP experienced deterioration in health outcomes in the long term. Most notably, perceived health and functional level decreased. Pain and severe fatigue were the most common health issues in adult CP. More research is required to explore the mechanisms at work in the process of aging in persons with CP. Systematic follow-up of adults with CP appears necessary to timely detect and intervene in health problems and functional decline. (C) 2017 by the American Congress of Rehabilitation Medicine