Bakketun Thomas, Gilhus Nils Erik, Rekand Tiina
1Department of Clinical Medicine, University of Bergen, Bergen, Norway.
2Department of Neurology, Haukeland University Hospital, Postbox 1400, 5020 Bergen, Norway.
Scoliosis Spinal Disord. 2019 Mar 8;14:3. doi: 10.1186/s13013-019-0177-3. eCollection 2019.
Myelomeningocele (MMC) is a congenital disorder that causes a variety of acute as well as late complications. Numerous health problems in adulthood have been described by the persons with MMC but not studied in clinical setting. This study gives implications for organization of the follow-up in adulthood.
To investigate the need for follow-up from different medical specialists as well as the need for organized focused rehabilitation among adults with MMC.
Retrospective cohort study on adults with MMC including multiple departments in a university hospital in Norway. The number and cause of specialized hospital consultations were recorded for every patient. Correlation between childhood health condition related to MMC and the need for specialized consultations in adulthood as well as correlations between number of consultations and anatomical level of MMC, age, and observation time was performed for the whole group.
In total, 38 patients had 672 consultations related to MMC. The most frequent departments were neurology, neurosurgery, urology, gastroenterology, and orthopedics. Most consultations were planned. Complexity of MMC-related health condition correlated to number of specialist consultations (rho = 0.420, = 0.009). Anatomical level of MMC, age, and length of observation time did not correlate with consultations. Pain and shunt failure were the most common reasons for consultations.
Persons with MMC have a need for continuous, life-long multispecialized follow-up and rehabilitation. This is crucial for optimal function, satisfaction with life, and for long-term survival. Systematic follow-up together with rehabilitation will optimize health service.
脊髓脊膜膨出（MMC）是一种先天性疾病，可导致多种急性和晚期并发症。患有MMC的人描述了成年期的许多健康问题，但尚未在临床环境中进行研究。本研究为成年期随访的组织安排提供了启示。
调查成年MMC患者对不同医学专科随访的需求以及有组织的针对性康复的需求。
对挪威一家大学医院多个科室的成年MMC患者进行回顾性队列研究。记录每位患者专科门诊的次数和原因。对整个研究组分析与MMC相关的儿童健康状况与成年期专科门诊需求之间的相关性，以及门诊次数与MMC解剖水平、年龄和观察时间之间的相关性。
共有38名患者进行了672次与MMC相关的门诊。最常涉及的科室是神经科、神经外科、泌尿外科、胃肠科和骨科。大多数门诊是预约的。与MMC相关的健康状况复杂性与专科门诊次数相关（rho = 0.420，P = 0.009）。MMC的解剖水平、年龄和观察时间长短与门诊次数无关。疼痛和分流失败是最常见的门诊原因。
MMC患者需要持续的、终身的多专科随访和康复。这对于最佳功能、生活满意度和长期生存至关重要。系统的随访与康复将优化医疗服务。
