PC2106: Determination of Feasibility and Acceptability of Newborn Screening in Nepal - A Pilot Study

Background: Strategic action plans, around newborn health evaluation, are needed to address the high neonatal mortality rate (NMR) in low/middle-income countries (LMIC). Implementation of surveillance systems could reveal unrecognized drivers of neonatal death. Newborn Screening (NBS) for inborn errors of metabolism is one such surveillance system that has played a significant role in public health strategies, impacting long-term health outcomes in the U.S. since 1966. Unknown causes of death in cases of neonatal demise in LMIC may be contributing to slow rates of NMR decline. In Nepal, NBS does not exist. It may offer insight into previously unknown causes of death or disability, providing an opportunity for intervention and/or family counselling, as it facilitates early diagnosis of potentially treatable disorders. Our aims were to determine feasibility of establishing NBS in Nepal using a limited number of disorders that can be confirmed/managed in Nepal and, to determine acceptability of introducing NBS, through surveys of all levels of maternal-child health providers, and parents.

Methods: This study was conducted at Paropakar Maternity Hospital, in Kathmandu, Nepal, between 11/2021 and 03/2022. Research approvals were obtained from the hospital’s Ethical Committee, Nepal Health Research Council, and Lurie Children’s Hospital IRB. Medical and Nursing staff were trained on collection and storage of dried-blood spots for NBS analysis. Samples were transferred to an intermediate laboratory in Kathmandu for transport to an NBS-focused, College of American Pathologists-accredited laboratory in Bangalore, with capability/capacity to perform analysis for Nepal. Surveys were developed to determine acceptability of NBS among health-care providers, and parental perception of study participation. Informed consent was obtained from parents and potential study participants completed a brief survey. We report feasibility and acceptability metrics.

Results: 496 term/late-preterm infants were enrolled, and metrics for feasibility are reported in Table 1. Ten (1.97%) of parents declined consent, and the most common reasons were: “I don’t wish my child to be pricked or have blood taken” and “I don’t understand the purpose of newborn screening”. Despite lack of NBS awareness, screening was almost universally accepted, and the most common reason for participation was “lack of cost” (89.8%). On reflection of statements that influenced their choice, the most common selections of consented participants were, “I was clear about the best choice for my baby” and “I chose without pressure from others”.

Conclusion: It is feasible to introduce NBS in Nepal, as most a priori metrics were met. Transport metrics to Intermediate and Bangalore laboratories were longer than expected due to travel restrictions of the Covid pandemic, within/outside Nepal. However, it was still possible to deliver results to families within two weeks of birth. Almost all parents consented to NBS and considered the “no cost” option most important, indicating that a government-sponsored NBS Program would be acceptable.