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Published on: October 20, 2019
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Long-term outcomes in sacral agenesis.
Calum Thomson1, Amun Mahmood2, Sung Min Yun2
1Royal Orthopaedic Hospital, Birmingham, West Midlands, UK. Calum.thomson3@nhs.net.
Summary
Sacral agenesis (SA) significantly impacts quality of life, with varying outcomes for adults and children. Spinal fusion surgery correlates with lower quality of life scores in SA patients.
Area of Science:
- Spinal cord and neurological disorders
- Pediatric orthopedics
- Quality of Life research
Background:
- Sacral agenesis (SA) encompasses a spectrum of conditions affecting function and quality of life (QoL).
- Perinatal diagnosis necessitates early prognostic discussions for parental counseling.
- This study gathered long-term, patient-reported outcomes from individuals with SA and their caregivers.
Purpose of the Study:
- To objectively assess the long-term quality of life (QoL) in patients with sacral agenesis (SA).
- To compare QoL outcomes between adult and pediatric cohorts with SA.
- To identify factors influencing QoL in individuals with SA.
Main Methods:
- Retrospective review of medical records for radiologically confirmed SA cases.
- Telephone administration of QoL questionnaires (EQ-5D-5L for adults, EQ-5D-Y for <16 years).
- Collection of data on SA severity (Renshaw grade), functional status (bladder control, mobility), employment, and living situation.
Main Results:
- Twenty-six SA patients (mean age 23.35 years) were analyzed; 68% had spinal deformities, 70% impaired bladder control, and 80% required walking aids.
- Adults reported a mean EQ-5D-5L index of +0.474, while the pediatric cohort (<16 years) reported +0.287.
- Patients who underwent spinal fusion procedures showed significantly lower QoL scores (p=0.022).
Conclusions:
- This study provides objective QoL data for individuals with SA, revealing diverse outcomes.
- Age-related differences in QoL may indicate long-term adaptation processes.
- Management strategies for SA should be individualized based on specific deformities and neurological deficits.
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