# 2- to 20-year myelomeningocele follow-up outcomes from a referral center in Southern Iran: the Shiraz experience

## TL;DR

This study examines long-term outcomes of children with myelomeningocele in Iran, highlighting the need for better coordinated care to improve health and quality of life.

## Contribution

This is the first study to characterize long-term outcomes of myelomeningocele patients in Iran.

## Key findings

- Patients showed significant differences in urinary/bowel incontinence, scoliosis, and limb function.
- Improved antenatal, perioperative, and long-term care coordination is urgently needed.
- Most patients underwent surgery at a mean age of 9.51 days.

## Abstract

The current convention for treatment of children with myelomeningocele (MMC) is timely surgical intervention combined with long-term follow-up by a multidisciplinary specialized team. This study aims to investigate the outcomes of MMC patients treated at Namazi Hospital.

All children presenting to Namazi Hospital with myelomeningocele between May 2001 and August 2020 were eligible for this study. For those with a documented telephone number, follow-up phone surveys with the patient’s caregivers, on top of the review of the medical documents were carried out to assess mortality, morbidities, and the functional outcome of the care provided to them.

A total of 125 patients were studied (62 females). All of the patients were followed up for a mean duration of 6.28 years (range 1–23 years). The majority were located in the lumbosacral area. All of the patients underwent postnatal surgical intervention for MMC in Namazi Hospital. Mean age at surgery was 9.51 days. There were statistically significant differences between urinary and bowel incontinence and presence of scoliosis, MMT grading of the lower limbs, school attendance, number of readmissions, and requirement of laminectomy at the initial surgical intervention.

This study is the first to characterize the long-term outcomes of MMC patients in Iran. This study illustrates that there is a great need for improved access to and coordination of care in antenatal, perioperative, and long-term stages to improve morbidity and mortality.

The online version contains supplementary material available at 10.1186/s40001-024-01667-0.