Middle-aged and older people with spina bifida myelomeningocele: a 4-year follow-up study

Project leader:

Thea Vigen, Medical Doctor, PhD

Abstract:

Spina bifida (SB) encompasses a heterogeneous group of congenital neural tube defects. SB myelomeningocele (SBM) is the most common and severe form due to neurological symptoms such as paralysis, neurogenic bladder and bowel, cognitive deficits, and others. Survival and consequences of SBM into middle- and older age has not yet been systematically studied. Hence, little is known with regard to cognitive, physical and psychological health in persons whom have lived with SBM for decades. In 2017, data from 30 individuals aged 51–76 with this spina bifida were collected in a cross-sectional study conducted at TRS National Resource Centre for Rare Disorders. The aim is to replicate the measurements based on the study conducted 4 years ago with the same individuals. They will be included in a prospective cohort study to increase knowledge about adults with spina bifida myeomeningocele aged 55 or older in 2021. The purpose is to investigate physical, psychological and cognitive functioning.  

The study design is a prospective cohort study, based on the population studied in 2017. The study is an interdisciplinary collaborative project and includes data collection through questionnaires, gait function testing, clinical examinations and neuropsychological testing. The analyses will be descriptive, and the data from 2017 will be compared with the new data to quantify the changes between the two studies.

Ethical approvals  

REK (application number 211538) 
SIKT: 561649

Funding: Internal  

Time period

Mars 2021 – end of 2024