Abstract
BackgroundMyelomeningocele (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.ObjectivesTo investigate the need for follow-up from different medical specialists as well as the need for organized focused rehabilitation among adults with MMC.MethodsRetrospective 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.ResultsIn 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, p = 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.ConclusionsPersons 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.
Highlights
IntroductionThe brain and spinal cord are formed by folding and closing of the neural plate
During fetal development, the brain and spinal cord are formed by folding and closing of the neural plate
Persons with MMC have a need for continuous, life-long multispecialized follow-up and rehabilitation
Summary
The brain and spinal cord are formed by folding and closing of the neural plate. Malformations of the spine due to neural tube defects are divided into spina bifida aperta (open) and spina bifida occulta (closed) [1]. Spina bifida aperta can be divided into meningocele and myelomeningocele (MMC), depending on whether the sac contains only meninges or neural tissue. Patients with MMC develop a variety of neurological problems including motor, sensory, and autonomic impairment [2,3,4]. Prevalence of neural tube defects in Norway has been estimated to 0.9/1000 and spina bifida to 0.4/ 1000 in the period 1999–2011 [11]. Most patients with neural tube defects have MMC [9, 12]. 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
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