Multicenter analysis of urological follow up loss in pediatric patients with myelomeningocele (MMC).

INTRODUCTION

Myelomeningocele (MMC) is a congenital condition associated with neurogenic bladder (NB), requiring consistent medical follow up (FU) to prevent complications. However, FU loss is a persistent issue that can lead to adverse outcomes such as chronic kidney disease. Understanding the extent and causes of FU loss is crucial for improving patient care and outcomes.

OBJECTIVE

To analyze the rate of FU loss in pediatric patients with NB due to MMC, identify contributing factors, evaluate initial treatment approaches and renal function status.

METHODS

A longitudinal, retrospective observational multicentric study was conducted using data from pediatric centers in Argentina and Chile. Patients with less than two years of FU were excluded. Collected demographic data included age, sex, consultation dates, and treatment details. FU loss was defined as no consultation for over two years. Statistical analysis was performed using chi-square tests (p < 0.05).

RESULTS

Among 667 patients, FU loss exceeding two years was observed in 365 (54.72%). The primary reason for FU loss was patient inaccessibility (67.31%), followed by changes in healthcare provider (23.56%) and financial constraints (3.29%). FU loss was significantly higher in Argentina (59.12%) compared to Chile (28.87 %) p < 0.05 and in public hospitals (60.54%) compared to private institutions (39.45%) p < 0.05. Patients with inconsistent follow versus complete FU develop end stage renal disease in 11.5 % vs 3.99 % (p < 0.05). Initial proactive management was observed in 22.04% of patients.

CONCLUSION

FU loss in patients with MMC is a major issue. In our cohort around 55% of the patient had no urologic consultation for two years being patient inaccessibility the principal cause. This may lead to an increased risk in end stage renal failure. Strategies to improve retention and ensure specialized care are needed.