Shlobin Nathan A, Yerkes Elizabeth B, Swaroop Vineeta T, Lam Sandi, McLone David G, Bowman Robin M
Department of Neurological Surgery, Division of Pediatric Neurosurgery, Ann & Robert H. Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
Department of Urology, Division of Pediatric Urology, Ann & Robert H. Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
Childs Nerv Syst. 2022 Sep;38(9):1675-1681. doi: 10.1007/s00381-022-05594-5. Epub 2022 Jul 23.
Open spina bifida (open SB) is the most complex congenital abnormality of the central nervous system compatible with long-term survival. Multidisciplinary care is required to address the effect of this disease on the neurological, musculoskeletal, genitourinary, and gastrointestinal systems, as well as the complex psychosocial impact on the developing child. Individuals with SB benefit from the involvement of neurosurgeons, orthopedic surgeons, urologists, physical medicine and rehabilitation specialists, pediatricians, psychologists, physical/occupational/speech therapists, social workers, nurse coordinators, and other personnel. Multidisciplinary clinics are the gold standard for coordinated, optimal medical and surgical care. Ann and Robert H. Lurie Children's Hospital, formerly known as Children's Memorial Hospital, was one of the first hospitals in the USA to manage patients with this complex disease in a multidisciplinary manner. We describe the longitudinal experience of the multidisciplinary Spina Bifida Center at our institution and highlight the advances that have arisen from this care model over time. This clinic serves as an exemplar of organized, effective, and patient-centered approach to the comprehensive care of people living with open SB.
开放性脊柱裂(open SB)是中枢神经系统最复杂的先天性异常疾病,患者有可能长期存活。针对这种疾病对神经、肌肉骨骼、泌尿生殖和胃肠系统的影响,以及对发育中儿童复杂的心理社会影响,需要多学科护理。患有脊柱裂的个体受益于神经外科医生、整形外科医生、泌尿科医生、物理医学与康复专家、儿科医生、心理学家、物理/职业/言语治疗师、社会工作者、护士协调员及其他人员的参与。多学科诊所是提供协调、优化的医疗和手术护理的金标准。安和罗伯特·H·卢里儿童医院(前身为儿童纪念医院)是美国最早以多学科方式管理这种复杂疾病患者的医院之一。我们描述了我们机构多学科脊柱裂中心的长期经验,并强调了随着时间推移这种护理模式所取得的进展。该诊所是对开放性脊柱裂患者进行全面护理的有组织、有效且以患者为中心方法的典范。