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Home-based color card screening for biliary atresia: the first steps for implementation of a nationwide newborn
Omid Madadi-Sanjani1, J Blaser2, G Voigt3
1Center of Pediatric Surgery, Hannover Medical School, Carl-Neuberg-Str. 1, 30625, Hannover, Germany. madadi-sanjani.omid@mh-hannover.de.
Insights
A voluntary stool color card screening for biliary atresia in Lower Saxony showed low practitioner engagement. This highlights the need for a mandatory, nationwide screening program to improve early diagnosis and outcomes for infants.
Area of Science:
- Neonatal Medicine
- Pediatric Surgery
- Public Health Screening
Background:
- Biliary atresia is a rare neonatal disease and the leading cause for pediatric liver transplantation.
- Kasai portoenterostomy is the primary treatment to prevent liver transplantation, with early intervention crucial for better outcomes.
- Few prognostic factors beyond age at Kasai portoenterostomy are known.
Purpose of the Study:
- To implement and evaluate a decentralized stool color card screening program for biliary atresia in Lower Saxony.
- To assess the effectiveness and acceptance of a voluntary screening initiative among healthcare providers.
- To gather data informing the potential for a nationwide obligatory screening program.
Main Methods:
- A stool color card screening project was established in cooperation with a health insurance company and Medical Association.
- 120,000 color cards were distributed to maternity hospitals, with program promotion in newspapers and medical journals.
- An evaluation involved contacting 30 maternity hospitals and local practitioners via multiple channels.
Main Results:
- Only 1.3% of maternity hospitals refused participation; 93.5% of contacted staff reported regular distribution and discussion of cards with parents.
- A significant proportion of local practitioners (80%) did not consider neonatal cholestasis a relevant daily problem.
- Only 55% of local practitioners viewed stool color card screening as useful.
Conclusions:
- The voluntary screening model proved insufficient due to low practitioner engagement and perceived relevance.
- The screening project was extended to outpatient maternity clinics in the second year.
- A proposal was made to the Federal Joint Committee for a nationwide obligatory stool color card screening program.
Introduction:
Biliary atresia is a rare neonatal disease and the most common indication for pediatric liver transplantation. Kasai portoenterostomy is the initial treatment, aiming to prevent liver transplantation. Beyond age at Kasai, few prognostic factors are known. Multiple countries have established screening methods to reduce the age at Kasai and recent analysis shows significant better outcomes for screening cohorts. In 2016, we established a decentralized stool color card screening in Lower Saxony and we present our first 2 years of experiences.
Methods:
In cooperation with a major German health insurance company and the Medical Association of Lower Saxony, we established the screening project, printed 120,000 color cards, and distributed them to all maternity hospitals. Program advertises were printed in newspapers and medical journals. After the first year, the project was evaluated. Thirty maternity hospitals and local practitioners were contacted via telephone, Internet, intranet, and pediatric journals.
Results:
One out of seventy-six maternity hospitals (1.3%) refused to participate in the screening. 30 hospitals (40%) were contacted and 93.5% of the interviewed staff reported that stool color cards were handed out regularly and discussed with the parents. Only 20% of local practitioners assessed neonatal cholestasis to be a relevant problem during daily practice, and 55% regarded a stool color card screening to be useful.
Conclusions:
In the second year, we extended the screening project to outpatient maternity clinics. Based on the responses of local practitioners, we regard the voluntary screening as insufficient and we have contacted the Federal Joint Committee for the initiation of a nationwide obligatory stool color card screening.
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