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article · Journal of Clinical Medicine

Barriers to Timely Referral of Children Born with Myelomeningocele in Zambia

20251 citationOpen accessUniversity Teaching Hospital

In plain language

Children born with myelomeningocele in Zambia face significant delays in accessing specialized surgical care. An investigation surveying 69 mother and infant pairs alongside 123 healthcare providers across 21 public facilities found that the median age of infants presenting for treatment was 7.5 days. Most patients travelled over 250 kilometres, primarily from rural district hospitals. Although 77 percent of mothers had at least one antenatal ultrasound, only 3 percent received a diagnosis before birth. Furthermore, 59 percent of healthcare providers reported that referrals occurred more than six hours after delivery, with delays significantly higher among facilities located farther from the tertiary centre. Inadequate prenatal diagnostic capabilities and geographical distance were highlighted as primary factors impeding prompt intervention, underscoring the need to strengthen both diagnostic precision and regional referral channels.

Key takeaways

  • Infants with myelomeningocele in Zambia presented for specialized care at a median age of 7.5 days, with 80 percent travelling more than 250 kilometres.
  • Despite 77 percent of mothers receiving antenatal ultrasound scans, only 3 percent received an accurate prenatal diagnosis.
  • Over half of surveyed providers reported referring affected newborns more than six hours after birth.
  • Delays in patient referrals were significantly correlated with greater distance from the tertiary treatment centre.

Why it matters

Myelomeningocele is a severe neural tube defect requiring prompt surgical treatment to prevent complications and reduce infant mortality. In low- and middle-income countries, system-wide delays in detection and hospital transfer leave newborns vulnerable to serious harm. Understanding these specific healthcare bottlenecks is essential for designing interventions that ensure timely, life-saving medical care for affected infants.

Commercialisation angle

The findings point to a need for improved prenatal screening technologies, diagnostic training tools, and streamlined healthcare logistics networks for clinical providers in resource-limited settings. However, as an observational health services study, the abstract provides evidence of operational bottlenecks rather than a specific product or commercial technology, indicating that any direct commercial application remains at a conceptual or policy level.

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Abstract

Background: Congenital anomalies impact 52 million infants worldwide with an estimated 94% living in low- and middle-income countries (LMICs). Approximately 200,000 children are born with a neural tube defect (NTD) in LMICs annually. Zambia is an LMIC with a high burden of myelomeningocele (MMC; a severe form of NTD). This study sought to characterize the barriers influencing access to healthcare for children born with MMC in Zambia. Methods: Two cross-sectional surveys were administered to healthcare providers at referring public health facilities and mothers of infants born with MMC undergoing surgical closure. The survey among mothers was nested in a longitudinal study evaluating surgical closure in Lusaka, Zambia from 28 May 2024 to 21 January 2025. Results: Sixty-nine mother–MMC baby dyads and 123 providers from 21 facilities were enrolled in the study. The median age at presentation for MMC was 7.5 (range 0–244) days old. Most patients were referred from rural district hospitals (51%; n = 35) and travelled greater than 250 km to access care (80%; n = 55). Seventy-seven percent (n = 53) of mothers reported receiving at least one antenatal ultrasound, with 62% (n = 43) undergoing an ultrasound after 20 weeks estimated gestational age. Of these, only 3% (n = 2) received an MMC diagnosis prior to delivery. Referring patients with MMC for further care greater than six hours after birth was reported by 59% providers (n = 73). Hospitals further away from the tertiary center were more likely to report late referrals (p < 0.001). Conclusions: There is a delay in the diagnosis and referral of infants with MMC to specialized care in Zambia, which may be attributed to inadequate in utero diagnosis capabilities and distance from the tertiary facility. Improving the accuracy of prenatal diagnosis and strengthening referral pathways to facilitate access to care among infants with MMC in Zambia are important for improving incidence and outcomes.

Research topics

  • Spinal Dysraphism and Malformations
  • Congenital Anomalies and Fetal Surgery
  • Fetal and Pediatric Neurological Disorders

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DOI: 10.3390/jcm14165721

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