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. 2019 Mar 8:14:3.
doi: 10.1186/s13013-019-0177-3. eCollection 2019.

Myelomeningocele: need for long-time complex follow-up-an observational study

Thomas Bakketun  1 , Nils Erik Gilhus  1   2 , Tiina Rekand  2   3
Affiliations

Myelomeningocele: need for long-time complex follow-up-an observational study

Thomas Bakketun et al. Scoliosis Spinal Disord. .

Abstract

Background: 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.

Objectives: To investigate the need for follow-up from different medical specialists as well as the need for organized focused rehabilitation among adults with MMC.

Methods: 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.

Results: 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, 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.

Conclusions: 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.

Keywords: Adult; Disability; Meningomyelocele; Neurological disorders; Outcome; Rehabilitation.

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Conflict of interest statement

TB is a medical doctor. NEG is a specialist in neurology the Haukeland University Hospital, Bergen, Norway and professor at the University of Bergen, Norway. TR is a specialist in neurology at the Haukeland University Hospital, Bergen, Norway and professor at the Sahlgrenska Academy, University of Gothenburg, Sweden.The project has been evaluated before the start at the University of Bergen and Haukeland University Hospital. No interventions have been performed related to this project.Individual data have not been used for this manuscript.The authors declare that they have no competing interests.Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
Regression analysis and curve estimation for linear correlation between number of health problems in MMC patients and number of consultations every month
See this image and copyright information in PMC

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