Feasibility of clinical newborn metabolic screening in a high-volume maternity center in Nepal

Abstract Background Strategic action plans around newborn health evaluation are needed, to address the high neonatal mortality rate in Nepal. Surveillance systems, like Newborn Metabolic Screening (NBS), could reveal unrecognized drivers of neonatal death. NBS is not routinely performed in Nepal. Ou...

Full description

Bibliographic Details
Main Authors: Janine Y. Khan, Kalpana U. Subedi, Shailendra B. Karmacharya, Prajwal Paudel, Dharma S. Manandhar, Rose Hennessy Garza, Keith A. Dookeran, Sunil R. Manandhar
Format: Article
Language:English
Published: BMC 2024-02-01
Series:BMC Global and Public Health
Subjects:
Online Access:https://doi.org/10.1186/s44263-024-00040-x
_version_ 1797272773231378432
author Janine Y. Khan
Kalpana U. Subedi
Shailendra B. Karmacharya
Prajwal Paudel
Dharma S. Manandhar
Rose Hennessy Garza
Keith A. Dookeran
Sunil R. Manandhar
author_facet Janine Y. Khan
Kalpana U. Subedi
Shailendra B. Karmacharya
Prajwal Paudel
Dharma S. Manandhar
Rose Hennessy Garza
Keith A. Dookeran
Sunil R. Manandhar
author_sort Janine Y. Khan
collection DOAJ
description Abstract Background Strategic action plans around newborn health evaluation are needed, to address the high neonatal mortality rate in Nepal. Surveillance systems, like Newborn Metabolic Screening (NBS), could reveal unrecognized drivers of neonatal death. NBS is not routinely performed in Nepal. Our objective was to determine the feasibility of establishing NBS, and its acceptability among healthcare providers and parents, in Nepal. Methods This prospective cohort study was conducted between November 2021 and May 2022 in term/late preterm infants born at Paropakar Maternity Hospital, Kathmandu, screening for 6 disorders that can be confirmed and managed locally. Staff were trained on dried-blood spot collection and transport protocols, performance metrics were established, and assays were performed at an accredited laboratory in Bangalore, India. Surveys were developed to determine acceptability among health-care providers and parents. Results Of 835 parents approached for the study, 825 (98.8%) consented. Parental surveys showed that 92% considered “no cost” option most important in choosing to participate in the study. Samples were transported to laboratories in Kathmandu and Bangalore in 36 ± 24 h, and 4.75 ± 1 days, which exceeded expected metrics of 24 and 48 h, respectively. Results were communicated to parents by 9.5 ± 2 days, which was within the expected metric window of 14 days. Abnormalities were reported in 13 infants and included 5 hemoglobinopathy traits (4 Hb E and 1 Hb D), 3 congenital hypothyroidism, 2 glucose-6-phosphate dehydrogenase deficiency, 1 congenital adrenal hyperplasia, 1 elevated acylcarnitine, and 1 biotinidase deficiency. Healthcare providers surveyed (n = 116) showed that 67% reported a moderate understanding of NBS; all indicated that screening would be beneficial. Most cited early diagnosis and treatment, as well as, providing risk to future pregnancies as significant benefits. 90% thought screening should be routinely performed. Conclusions We demonstrate that it is feasible to introduce NBS in Nepal. Transport metrics were longer than expected due to COVID pandemic travel restrictions; however, it was possible to deliver results to families within 2 weeks of birth. Parents overwhelmingly considered “no cost” option as the most important in choosing to screen. A government-sponsored program will be a key factor in establishing NBS in Nepal.
first_indexed 2024-03-07T14:34:10Z
format Article
id doaj.art-9b7ef9e7f581406db565a63b09077b2c
institution Directory Open Access Journal
issn 2731-913X
language English
last_indexed 2024-03-07T14:34:10Z
publishDate 2024-02-01
publisher BMC
record_format Article
series BMC Global and Public Health
spelling doaj.art-9b7ef9e7f581406db565a63b09077b2c2024-03-05T20:46:07ZengBMCBMC Global and Public Health2731-913X2024-02-01211910.1186/s44263-024-00040-xFeasibility of clinical newborn metabolic screening in a high-volume maternity center in NepalJanine Y. Khan0Kalpana U. Subedi1Shailendra B. Karmacharya2Prajwal Paudel3Dharma S. Manandhar4Rose Hennessy Garza5Keith A. Dookeran6Sunil R. Manandhar7Department of Pediatrics, Ann & Robert H. Lurie Children’s HospitalParopakar Maternity and Women’s HospitalParopakar Maternity and Women’s HospitalParopakar Maternity and Women’s HospitalMother and Infant Research Activities (MIRA)Joseph J. Zilber College of Public Health, University of Wisconsin-MilwaukeeJoseph J. Zilber College of Public Health, University of Wisconsin-MilwaukeeMother and Infant Research Activities (MIRA)Abstract Background Strategic action plans around newborn health evaluation are needed, to address the high neonatal mortality rate in Nepal. Surveillance systems, like Newborn Metabolic Screening (NBS), could reveal unrecognized drivers of neonatal death. NBS is not routinely performed in Nepal. Our objective was to determine the feasibility of establishing NBS, and its acceptability among healthcare providers and parents, in Nepal. Methods This prospective cohort study was conducted between November 2021 and May 2022 in term/late preterm infants born at Paropakar Maternity Hospital, Kathmandu, screening for 6 disorders that can be confirmed and managed locally. Staff were trained on dried-blood spot collection and transport protocols, performance metrics were established, and assays were performed at an accredited laboratory in Bangalore, India. Surveys were developed to determine acceptability among health-care providers and parents. Results Of 835 parents approached for the study, 825 (98.8%) consented. Parental surveys showed that 92% considered “no cost” option most important in choosing to participate in the study. Samples were transported to laboratories in Kathmandu and Bangalore in 36 ± 24 h, and 4.75 ± 1 days, which exceeded expected metrics of 24 and 48 h, respectively. Results were communicated to parents by 9.5 ± 2 days, which was within the expected metric window of 14 days. Abnormalities were reported in 13 infants and included 5 hemoglobinopathy traits (4 Hb E and 1 Hb D), 3 congenital hypothyroidism, 2 glucose-6-phosphate dehydrogenase deficiency, 1 congenital adrenal hyperplasia, 1 elevated acylcarnitine, and 1 biotinidase deficiency. Healthcare providers surveyed (n = 116) showed that 67% reported a moderate understanding of NBS; all indicated that screening would be beneficial. Most cited early diagnosis and treatment, as well as, providing risk to future pregnancies as significant benefits. 90% thought screening should be routinely performed. Conclusions We demonstrate that it is feasible to introduce NBS in Nepal. Transport metrics were longer than expected due to COVID pandemic travel restrictions; however, it was possible to deliver results to families within 2 weeks of birth. Parents overwhelmingly considered “no cost” option as the most important in choosing to screen. A government-sponsored program will be a key factor in establishing NBS in Nepal.https://doi.org/10.1186/s44263-024-00040-xNewborn metabolic screeningLow–middle-income countriesNepal
spellingShingle Janine Y. Khan
Kalpana U. Subedi
Shailendra B. Karmacharya
Prajwal Paudel
Dharma S. Manandhar
Rose Hennessy Garza
Keith A. Dookeran
Sunil R. Manandhar
Feasibility of clinical newborn metabolic screening in a high-volume maternity center in Nepal
BMC Global and Public Health
Newborn metabolic screening
Low–middle-income countries
Nepal
title Feasibility of clinical newborn metabolic screening in a high-volume maternity center in Nepal
title_full Feasibility of clinical newborn metabolic screening in a high-volume maternity center in Nepal
title_fullStr Feasibility of clinical newborn metabolic screening in a high-volume maternity center in Nepal
title_full_unstemmed Feasibility of clinical newborn metabolic screening in a high-volume maternity center in Nepal
title_short Feasibility of clinical newborn metabolic screening in a high-volume maternity center in Nepal
title_sort feasibility of clinical newborn metabolic screening in a high volume maternity center in nepal
topic Newborn metabolic screening
Low–middle-income countries
Nepal
url https://doi.org/10.1186/s44263-024-00040-x
work_keys_str_mv AT janineykhan feasibilityofclinicalnewbornmetabolicscreeninginahighvolumematernitycenterinnepal
AT kalpanausubedi feasibilityofclinicalnewbornmetabolicscreeninginahighvolumematernitycenterinnepal
AT shailendrabkarmacharya feasibilityofclinicalnewbornmetabolicscreeninginahighvolumematernitycenterinnepal
AT prajwalpaudel feasibilityofclinicalnewbornmetabolicscreeninginahighvolumematernitycenterinnepal
AT dharmasmanandhar feasibilityofclinicalnewbornmetabolicscreeninginahighvolumematernitycenterinnepal
AT rosehennessygarza feasibilityofclinicalnewbornmetabolicscreeninginahighvolumematernitycenterinnepal
AT keithadookeran feasibilityofclinicalnewbornmetabolicscreeninginahighvolumematernitycenterinnepal
AT sunilrmanandhar feasibilityofclinicalnewbornmetabolicscreeninginahighvolumematernitycenterinnepal