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A parental perspective concerning barriers to care for neural tube defects in China

Andrew Campion1, Clement Lee1, Nan Bao2

  • 1David Geffen School of Medicine at UCLA, Los Angeles, California, USA.

Surgical Neurology International
|September 15, 2017
PubMed

Insights

In China, the referring physician is a major barrier to treating infants with neural tube defects (NTDs). Expediting diagnosis and care for these conditions is crucial.

Area of Science:

  • Pediatric Neurosurgery
  • Public Health
  • Global Surgery

Background:

  • The People's Republic of China (PRC) has the world's highest incidence of neural tube defects (NTDs).
  • NTDs represent a significant global disease burden, often requiring surgical intervention.
  • Patient perspectives on barriers to NTD care in the PRC remain unstudied.

Purpose of the Study:

  • To investigate perceived barriers to surgical care for pediatric neural tube defects in the PRC.
  • To compare care access between patients with families and orphaned patients.

Main Methods:

  • Surveys administered to 69 families at Shanghai Children's Medical Center (SCMC) and orphaned patients from the Baobei Foundation.
  • Participants identified all relevant barriers to care.
  • Data collected between June 11, 2014, and July 17, 2014.

Main Results:

  • The primary barrier identified was the referring physician's lack of knowledge regarding the child's condition (P < 10^-5).
  • Patients treated at SCMC were older (7 months vs. 1 month, P = 0.001) and visited more hospitals (3.14 vs. 1.0, P < 10^-5) than orphans.
  • Orphaned patients received earlier treatment, bypassing typical referral pathways.

Conclusions:

  • Referring physicians represent a significant barrier to timely NTD treatment in the PRC.
  • The expedited care for orphaned patients suggests that bypassing the referral process improves outcomes.
  • Addressing physician knowledge gaps could expedite diagnosis and treatment for NTDs.
Abstract

Keywords:
Barriers to carePeople's Republic of Chinaneural tube defectreferral systemsurgerysurvey

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