脊柱裂成人护理：现状与未来方向。
Care for Adults with Spina Bifida: Current State and Future Directions.
作者信息
Mukherjee Shubhra, Pasulka Jacqueline
机构信息
Department of Physical Medicine and Rehabilitation, Rehabilitation Institute of Chicago, Chicago, Illinois.
Des Moines University College of Osteopathic Medicine, Des Moines, Iowa.
出版信息
Top Spinal Cord Inj Rehabil. 2017 Spring;23(2):155-167. doi: 10.1310/sci2302-155.
Abstract
The care for adults with spina bifida is an important area to study. As increasing numbers of patients with spina bifida survive into adulthood, they expect to thrive and receive the best possible care into adulthood to maintain their health. Understanding the health needs in this emerging and changing population will help clinicians provide the best anticipatory care for adults with spina bifida and continue to improve outcomes. This will also impact pediatric care by improving the ability to determine preventive methods from early on and understand the impacts of pediatric care and decisions over the lifespan.
摘要
对成年脊柱裂患者的护理是一个重要的研究领域。随着越来越多的脊柱裂患者活到成年，他们期望茁壮成长，并在成年后获得尽可能好的护理以维持健康。了解这个不断涌现和变化的人群的健康需求，将有助于临床医生为成年脊柱裂患者提供最佳的预防性护理，并持续改善治疗效果。这也将通过提高从早期就确定预防方法的能力以及理解儿科护理及其决策在整个生命周期中的影响，对儿科护理产生影响。
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J Spinal Cord Med. 2018 Jan;41(1):55-62. doi: 10.1080/10790268.2016.1195071. Epub 2016 Aug 23.
2
Views of Young People With Chronic Conditions on Transition From Pediatric to Adult Health Services.患有慢性病的年轻人对从儿科向成人医疗服务过渡的看法。
J Adolesc Health. 2016 Sep;59(3):345-353. doi: 10.1016/j.jadohealth.2016.04.004. Epub 2016 Jun 8.
3
A snapshot of the adult spina bifida patient - high incidence of urologic procedures.成年脊柱裂患者的现状——泌尿外科手术的高发生率
Cent European J Urol. 2016;69(1):72-7. doi: 10.5173/ceju.2016.596. Epub 2016 Jan 28.
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Transl Androl Urol. 2016 Feb;5(1):3-11. doi: 10.3978/j.issn.2223-4683.2015.12.06.
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J Obstet Gynaecol Can. 2015 Jun;37(6):534-52. doi: 10.1016/s1701-2163(15)30230-9.
6
Barriers to breast and cervical cancer screening for women with physical disability: A review.身体残疾女性进行乳腺癌和宫颈癌筛查的障碍：一项综述。
Women Health. 2016;56(2):141-56. doi: 10.1080/03630242.2015.1086463. Epub 2015 Sep 1.
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