Most of the world’s children are born in low- and middle-income countries such as China.1 Neonatal mortality accounts for 47% of deaths in children younger than 5 years, and neonatal mortality reductions have lagged behind overall reductions in childhood mortality.2 The leading driver of neonatal mortality is prematurity. Neonatal care is a resource-intensive challenge, requiring a combination of skilled personnel, clean facilities, and advanced therapeutics. As low- and middle-income countries develop these lifesaving capabilities, an essential question arises: how to finance increasingly costly interventions that improve the quality of care while expanding access to care. In the meantime, the families who must bear the costs of advanced care would be well served by information regarding outcomes, such as the likelihood of survival and intact survival. In JAMA Network Open, Jiang and colleagues3 grapple with this tension in describing the association of discharge against medical advice (DAMA) from neonatal intensive care units (NICUs) with neonatal mortality in select hospitals in China.
The authors use propensity score matching to estimate the outcomes of very preterm infants who were DAMA from NICUs in China had they received complete care. Their results are striking. In a group of 14 083 very preterm infants from 24 weeks’ to 32 weeks’ gestational age at birth, 13% were taken out of the hospital by their families against medical advice. Of these, 79% required intensive care (ie, mechanical ventilation, inotropic therapy, or total parenteral nutrition) on the day of discharge. Although the authors cannot provide follow-up data on the DAMA infants, considering the risk factors and significant needs of these preterm infants on discharge, presumably the outcomes are dismal.
In contrast, the authors report that in a matched cohort of infants who received completed medical care, 82% survived to hospital discharge, and 59% survived without major morbidity (defined as survival without necrotizing enterocolitis, interventricular hemorrhage, periventricular leukomalacia, and retinopathy of prematurity). The authors report survival rates by gestational age from 26 weeks to 31 weeks in the matched non-DAMA cohort that approach those in developed countries.4 The authors conclude that decreasing DAMA may have a substantial association with the survival of very preterm infants in China.
The authors demonstrate, perhaps unsurprisingly, that high-quality neonatal care with the possibility of good outcomes is available to very preterm infants in China. Not all families choose to access this care. The rationale for DAMA is likely multifactorial, but economic concerns, such as the inability to afford NICU care, may have played a large role. Despite the 2009 Chinese health system reforms to expand health insurance to near universal coverage, current payment schemes have not decreased per-capita out-of-pocket expenses.5 Rather, these expenses continue to rise and place a financial burden on families. Catastrophic health expenses, such as those necessary for critical care, disproportionately affect the poorest in the population.6 The authors cite insurance subsidy rates of 50% to 80% for the cost of NICU care in China. It would be informative to know the private share in both relative and absolute terms in the context of the family’s finances. Given the data cited, the private share of the cost seems exorbitant and is likely prohibitive in many instances. Jiang and colleagues are correct that decreasing DAMA is essential to improving neonatal mortality in China, but this demands a health system that can better cover the high costs associated with neonatal critical care.
Accordingly, the conversation must shift toward the long-term economic benefit of caring for very preterm infants when weighing decisions that incur short-term costs. In the landmark cost-benefit analysis by Boyle et al7 almost 4 decades ago, providing neonatal care for premature infants was costly, but when viewed against the possible lifetime earnings of survivors, early investment reaped financial rewards. Each low- and middle-income country may have unique characteristics that inform endeavors to improve health care access while containing costs. These factors include cost-sharing structures, available technologies, and outcomes data.
In summary, the current study offers objective data in framing the discussion with families regarding their decisions to continue medical care for very preterm infants in China. The study reports likely good health outcomes in very premature infants who are now DAMA. Despite universal health insurance, a substantial portion of medical costs are borne by the family. Future steps should address policies that shift the immediate costs of NICU care away from the families, with the view of societal benefits to be reaped in the future. Civil society has a moral obligation, and likely economic incentives, to shoulder this burden.
Published: June 17, 2021. doi:10.1001/jamanetworkopen.2021.13649
Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2021 Soma G et al. JAMA Network Open.
Corresponding Author: Lei Chen, MD, MHS, Associate Professor of Pediatrics, Section of Pediatric Emergency Medicine, Yale University School of Medicine, 100 York St, #1F, New Haven, CT 06510 (firstname.lastname@example.org).
Conflict of Interest Disclosures: None reported.
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Soma G, Chen L. High Hopes for Very Preterm Infants in Neonatal Intensive Care Units in China. JAMA Netw Open. 2021;4(6):e2113649. doi:10.1001/jamanetworkopen.2021.13649
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