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Myelomeningocele: need for long-time complex follow-up-an observational study
Thomas Bakketun1, Nils Erik Gilhus1,2, Tiina Rekand2,3
11Department of Clinical Medicine, University of Bergen, Bergen, Norway.
Adults with myelomeningocele (MMC) require lifelong, multidisciplinary medical care and rehabilitation. This study highlights the significant need for continuous specialist follow-up to manage health complications and improve quality of life.
Area of Science:
- Neurology
- Neurosurgery
- Urology
- Gastroenterology
- Orthopedics
Background:
- Myelomeningocele (MMC) is a congenital condition with significant long-term health implications.
- Adult health issues in MMC patients are often under-documented in clinical settings.
- This study addresses the need for organized adult follow-up care for MMC.
Purpose of the Study:
- To determine the necessity of specialized medical follow-up for adults with MMC.
- To assess the need for structured, focused rehabilitation programs for adults with MMC.
Main Methods:
- Retrospective cohort study of adult MMC patients at a Norwegian university hospital.
- Analysis of specialized hospital consultations, including number and reasons.
- Correlation analysis between childhood health status, MMC level, age, and follow-up needs.
Main Results:
- 38 adult MMC patients had 672 consultations, primarily in neurology, neurosurgery, urology, gastroenterology, and orthopedics.
- Consultations were mostly planned, with pain and shunt failure as common reasons.
- Higher MMC complexity correlated with increased specialist consultations.
Conclusions:
- Continuous, lifelong, multispecialty follow-up and rehabilitation are essential for adults with MMC.
- Optimizing health services through systematic follow-up improves function, life satisfaction, and survival.
- Addressing the ongoing healthcare needs of adults with MMC is crucial.
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