Long-term outcomes in sacral agenesis

Introduction Sacral agenesis (SA) includes a range of clinical presentations of varying severity, with implications for function and quality of life (QoL). Diagnosis is often made perinatally, and prognostic discussions become an important aspect of parental counselling. This study engaged SA suffer...

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Bibliographic Details
Published in:Child's nervous system 2024-06, Vol.40 (6), p.1791-1797
Main Authors: Thomson, Calum, Mahmood, Amun, Yun, Sung Min, Hartley, Laura, Botchu, Rajesh, Mohmoud, Khalid, Sewell, Mathew, Mehta, Jwalant
Format: Article
Language:English
Subjects:
Abnormalities, Multiple
Adolescent
Adult
Child
Child, Preschool
Female
Humans
Infant
Male
Medicine
Medicine & Public Health
Meningocele
Middle Aged
Neurosciences
Neurosurgery
Quality of Life
Retrospective Studies
Sacrococcygeal Region - abnormalities
Sacrum - abnormalities
Surveys and Questionnaires
Treatment Outcome
Young Adult
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Summary:Introduction Sacral agenesis (SA) includes a range of clinical presentations of varying severity, with implications for function and quality of life (QoL). Diagnosis is often made perinatally, and prognostic discussions become an important aspect of parental counselling. This study engaged SA sufferers and their caregivers to obtain objective, long-term patient reported outcome data. Method Patients with radiologically confirmed SA from a single tertiary spinal unit underwent retrospective medical record review. Patients were then contacted by telephone to complete QoL questionnaires including EQ-ED-5L for adults and EQ-ED-Y for 
ISSN:0256-7040
1433-0350
DOI:10.1007/s00381-024-06326-7