Salomão J F, Leibinger R D, Carvalho J G, Pinheiro J A, Lucchesi G L, Bomfim V
Departamento de Cirurgia, Instituto Fernandes Figueira (M.S.-Fiocruz), Rio de Janeiro, Brasil.
Arq Neuropsiquiatr. 1995 Sep;53(3-A):444-50.
Myelomeningocele is the most common congenital malformation of the nervous system and despite its complexity and involvement of multiple organs is compatible with long survival. The peculiar characteristics of this malformation expose myelomeningocele patients to acute and chronic care problems with effects in quality of survival. In order to evaluate the quality of the follow-up of spina bifida patients in a pediatric hospital, the authors examined 54 patients attending the neurosurgical outpatient unity of a pediatric hospital. The lack of a multidisciplinary spina bifida clinic in Rio de Janeiro forced the patients to pursuit for complimentary medical and paramedical care outside the hospital with significant effects in the quality of survival. In consequence, only 25% of the patients were able to walk and community ambulation was nearly absent. Only 66.6% had a regular rehabilitation program and nearly 50% had routine orthopedics consultations. Almost half of the patients had no urological referral at all and 75% were incontinent, with recurrent urinary infections ranging 72.2%. The rates of neurosurgical complications were similar to those observed in the literature. We concluded that the quality of survival of patients with neural tube defects is strongly influenced by the adverse socio-economical conditions and the lack of a spina bifida multidisciplinary clinic.
脊髓脊膜膨出是最常见的先天性神经系统畸形，尽管其情况复杂且涉及多个器官，但患者仍可长期存活。这种畸形的特殊特征使脊髓脊膜膨出患者面临急性和慢性护理问题，影响生存质量。为了评估一家儿科医院中脊柱裂患者的随访质量，作者检查了在该儿科医院神经外科门诊就诊的54名患者。里约热内卢缺乏多学科脊柱裂诊所，迫使患者在医院外寻求补充性医疗和辅助医疗护理，这对生存质量产生了重大影响。因此，只有25%的患者能够行走，几乎没有患者能在社区中独立行走。只有66.6%的患者有定期的康复计划，近50%的患者有常规的骨科会诊。几乎一半的患者根本没有接受过泌尿外科转诊，75%的患者大小便失禁，反复发生尿路感染的比例为72.2%。神经外科并发症的发生率与文献中观察到的相似。我们得出结论，神经管缺陷患者的生存质量受到不利的社会经济条件和缺乏脊柱裂多学科诊所的强烈影响。
