Anderson Kim D
Reeve-Irvine Research Center, Department of Anatomy and Neurobiology, University of California at Irvine, Irvine, California 92697-4292, USA.
J Neurotrauma. 2004 Oct;21(10):1371-83. doi: 10.1089/neu.2004.21.1371.
In the United States alone, there are more than 200,000 individuals living with a chronic spinal cord injury (SCI). Healthcare for these individuals creates a significant economic burden for the country, not to mention the physiological, psychological, and social suffering these people endure everyday. Regaining partial function can lead to greater independence, thereby improving quality of life. To ascertain what functions are most important to the SCI population, in regard to enhancing quality of life, a novel survey was performed in which subjects were asked to rank seven functions in order of importance to their quality of life. The survey was distributed via email, postal mail, the internet, interview, and word of mouth to the SCI community at large. A total of 681 responses were completed. Regaining arm and hand function was most important to quadriplegics, while regaining sexual function was the highest priority for paraplegics. Improving bladder and bowel function was of shared importance to both injury groups. A longitudinal analysis revealed only slight differences between individuals injured <3 years compared to those injured >3 years. The majority of participants indicated that exercise was important to functional recovery, yet more than half either did not have access to exercise or did not have access to a trained therapist to oversee that exercise. In order to improve the relevance of research in this area, the concerns of the SCI population must be better known and taken into account. This approach is consistent with and emphasized by the new NIH roadmap to discovery.
仅在美国,就有超过20万慢性脊髓损伤(SCI)患者。为这些患者提供医疗保健给国家带来了巨大的经济负担,更不用说这些人每天所承受的生理、心理和社会痛苦了。恢复部分功能可以带来更大的独立性,从而提高生活质量。为了确定对于脊髓损伤患者群体而言,在提高生活质量方面哪些功能最为重要,开展了一项新颖的调查,要求受试者按照对其生活质量的重要程度对七种功能进行排序。该调查通过电子邮件、邮政信件、互联网、访谈以及口口相传的方式分发给广大脊髓损伤群体。共完成了681份回复。恢复手臂和手部功能对四肢瘫痪者最为重要,而恢复性功能则是截瘫者的首要任务。改善膀胱和肠道功能对这两个损伤群体都具有同等重要性。一项纵向分析显示,受伤不到3年的个体与受伤超过3年的个体之间仅有细微差异。大多数参与者表示运动对功能恢复很重要,但超过一半的人要么无法进行运动,要么没有接受过专业治疗师监督的运动。为了提高该领域研究的相关性,必须更好地了解并考虑脊髓损伤群体的关切。这种方法与美国国立卫生研究院(NIH)新的发现路线图一致并得到其强调。