Dataset Information

Up-to-date quality survey and evaluation of neonatal screening programs in China.

ABSTRACT:

Aims

To thoroughly evaluate the quality of the entire process of neonatal screening (NBS) in China.

Methods

We collected survey questionnaires from 54.4% (135/248) of NBS institutions in China and conducted on-site visits to 20 of these facilities to validate the data. The quality performance of the institutions was evaluated, and differences across various factors were analysed.

Results

Merely 62.5% of the provinces had acceptable performance in neonatal screening. Institutions with limited staff were more prone to organizational management shortcomings. Institutions in provinces with a per capita GDP below 10,000 USD exhibited lower quality control levels than those with a per capita GDP between 10,000 and 15,000 USD. Obstetrics departments have a lower awareness of quality control compared to other blood collection facilities.

Conclusions

A nationwide, comprehensive quality control system for continuous enhancements in quality management, screening, diagnosis, and treatment is imperative to ensure prompt diagnosis and intervention.

SUBMITTER: Zhang J

PROVIDER: S-EPMC10799474 | biostudies-literature | 2024 Jan

REPOSITORIES: biostudies-literature

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Publications

Up-to-date quality survey and evaluation of neonatal screening programs in China.

Zhang Jinming J Jin Lizi L Feng Penghui P Fei Yu Y Li Wen W Jiang Ting T Zhang Zehao Z He Falin F

BMC pediatrics 20240120 1

<h4>Aims</h4>To thoroughly evaluate the quality of the entire process of neonatal screening (NBS) in China.<h4>Methods</h4>We collected survey questionnaires from 54.4% (135/248) of NBS institutions in China and conducted on-site visits to 20 of these facilities to validate the data. The quality performance of the institutions was evaluated, and differences across various factors were analysed.<h4>Results</h4>Merely 62.5% of the provinces had acceptable performance in neonatal screening. Institu ...[more]

PMID: 38245686

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Project description:BackgroundThe goal of newborn screening is early identification of babies with a high risk for disorders that may not be clinically evident at birth, but have severe consequences if untreated. New insight into inherited diseases and the ability to test for numerous diseases using new technique such as tandem mass spectrometry have made it practical to greatly expand the number of conditions tested. The expanded neonatal screening is now available and relatively simple, but this represents only a part of the picture. Positive results require follow-up confirmation. Most disorders screened require confirmatory biochemical or genetic tests and specialist visits. An efficient system is needed for managing the care of affected newborns. Expanded newborn screening is not yet available in all Regions of Italy, but discussions aimed at organizing universal access are underway. If these are successful, the role of the pediatrician as the primary contact with the parents is expected to become even more important.MethodsWe have conducted a survey of Italian pediatricians to assess their familiarity and opinions on newborn screening in general and on expanded newborn screening. All members of the Italian Association of Pediatricians (n = 9000) were invited to compile a 10-item questionnaire online.ResultsThe response rate was 10 %, corresponding to 605 of 6000 active members. Respondents were from all Regions of Italy, with the highest number of responses coming from Lombardy (138, 22.8 %), Campania and Puglia (n = 61; 10.1 %). Interestingly, expanded neonatal screening was not available in any of these Regions at the time of the survey. Regarding their understanding of neonatal screening in general, most respondents (n = 552; 91.1 %) considered that they had at least a sufficient level of knowledge; however, only 59.6 % thought they had sufficient knowledge of expanded newborn screening.ConclusionsSuccessful implementation of a universal expanded NBS program will require efficient procedures for follow-up, diagnosis and treatment to prevent morbidity and mortality of infants and to reduce the period of uncertainty for unaffected families. Pediatricians may need additional training to allow them to fulfill their tasks of coordinating this process while keeping families informed and reassured.

Dataset Information

Up-to-date quality survey and evaluation of neonatal screening programs in China.

Aims

Methods

Results

Conclusions

Publications

Up-to-date quality survey and evaluation of neonatal screening programs in China.

Similar Datasets

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