家长报告婴幼儿期脊柱裂的医疗保健管理。
Parents' report on the health care management of spina bifida in early childhood.
机构信息
National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA.
Department of Pediatrics, Division of Medical Genetics, University of Utah, Salt Lake City, UT, USA.
出版信息
J Pediatr Rehabil Med. 2022;15(4):621-631. doi: 10.3233/PRM-220027.
PURPOSE
This study aimed to describe health care use by type of health providers and care settings visited by children with spina bifida (SB) and to compare this use between children with and without a shunt.
METHODS
Health care use data were extracted from a larger study on the health and functioning of children with SB aged 3-6 years. The present study focused on the medical information subsection of a parent-reported survey related to SB care, general care, specialty care (e.g., neurosurgery), emergency care, and complications related to SB and shunts.
RESULTS
Parents of 101 children with SB participated. Most of the children were male with myelomeningocele and had a shunt. They visited a health care provider for SB care an average of 7.4 times and a specialist an average of 11.9 times in the previous 12 months. Most visited a multidisciplinary clinic for SB-related care and a private physician's office for general care. Children with a shunt had more SB-related medical visits, more visits to a specialist, and a greater number of different types of specialists than those without it. Frequency of emergency room visits did not differ between the two groups. Health providers informed parents about headaches, vomiting, and fever as signs of complications, and some parents did report shunt-related complications.
CONCLUSION
SB is a complex medical condition requiring that children receive medical care from various medical specialists, especially for children with a shunt. Findings on health care use suggest high levels of monitoring and care coordination that parents navigate to care for their child.
目的
本研究旨在描述脊柱裂（SB）患儿就诊的医疗服务提供者类型和就诊场所的医疗保健使用情况，并比较有和无分流器的患儿之间的使用情况。
方法
从一项关于 3-6 岁脊柱裂儿童健康和功能的更大规模研究中提取了医疗保健使用数据。本研究主要关注与脊柱裂护理、一般护理、专科护理（如神经外科）、急诊护理以及与脊柱裂和分流器相关的并发症相关的父母报告调查的医疗信息部分。
结果
101 名脊柱裂患儿的家长参与了研究。大多数患儿为男性，患有脊髓脊膜膨出且有分流器。他们在过去 12 个月中平均接受 7.4 次脊柱裂护理和 11.9 次专科治疗。大多数人前往多学科诊所进行脊柱裂相关护理，以及私人医生办公室进行一般护理。有分流器的患儿接受了更多的脊柱裂相关医疗就诊，更多的专科就诊，以及更多类型的专科就诊。两组患儿急诊就诊的频率没有差异。医疗服务提供者告知家长头痛、呕吐和发烧是并发症的迹象，一些家长确实报告了分流器相关的并发症。
结论
脊柱裂是一种复杂的医疗状况，需要儿童接受各种医学专家的医疗护理，尤其是有分流器的儿童。医疗保健使用情况的研究结果表明，存在高水平的监测和护理协调，家长需要为其孩子进行护理。
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