Evaluation of the Newborn Screening Pilot for Sickle Cell Disease in Suriname Using the Non-Adoption, Abandonment, Scale-Up, Spread, and Sustainability (NASSS) Framework.

NASSS SCD Suriname abandonment implementation research newborn screening non-adoption scale-up sickle cell disease spread and sustainability framework

Journal

International journal of neonatal screening
ISSN: 2409-515X
Titre abrégé: Int J Neonatal Screen
Pays: Switzerland
ID NLM: 101665400

Informations de publication

Date de publication:
04 Jul 2024
Historique:
received: 27 05 2024
revised: 26 06 2024
accepted: 01 07 2024
medline: 26 7 2024
pubmed: 26 7 2024
entrez: 25 7 2024
Statut: epublish

Résumé

The early detection of sickle cell disease (SCD) is vital to reduce mortality among affected children. Suriname currently lacks a newborn screening programme (NSP) for SCD. We performed a pilot programme to evaluate the scalability of such an initiative. Dried blood spots were collected from five birth centres and subjected to electrophoresis analysis. The programme scalability was evaluated using the non-adoption, abandonment, scale-up, spread, and sustainability framework. Challenges across six domains (illness, technology, value proposition, adopter system, organisation, and societal system), were categorised hierarchically as simple 😊, complicated 😐, or complex 😢. It has been proven that implementing programmes with mainly complicated challenges is difficult and those in mainly complex areas may be unachievable. SCD was detected in 33 of 5185 (0.64%) successfully screened newborns. Most of the domains were classified as simple or complicated. Disease detection and technology suitability for screening in Suriname were confirmed, with favourable parental acceptance. Only minor routine adjustment was required from the medical staff for programme implementation. Complex challenges included a reliance on external suppliers for technical maintenance, ensuring timely access to specialised paediatric care for affected newborns, and securing sustainable financial funding. Scaling up is challenging but feasible, particularly with a targeted focus on identified complex challenges.

Identifiants

pubmed: 39051402
pii: ijns10030046
doi: 10.3390/ijns10030046
pii:
doi:

Types de publication

Journal Article

Langues

eng

Subventions

Organisme : Uitvoeringsorganisatie Twinningfaciliteit Suriname-Nederland
ID : UTSN2-1-Z-113-G

Auteurs

Ming-Jan Tang (MJ)

Department of Paediatrics, Streekziekenhuis Koningin Beatrix, 7101 BN Winterswijk, The Netherlands.

Jimmy Roosblad (J)

Laboratory Academisch Ziekenhuis, Paramaribo, Suriname.

John Codrington (J)

Laboratory Academisch Ziekenhuis, Paramaribo, Suriname.

Marjolein Peters (M)

Department of Paediatric Haematology, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, 1105 AZ Amsterdam, The Netherlands.

Aartie Toekoen (A)

Academic Pediatric Center Suriname, Academic Hospital Paramaribo, Paramaribo, Suriname.

Patrick F van Rheenen (PF)

University of Groningen, University Medical Centre Groningen, Beatrix Children's Hospital, Department of Paediatric Gastroenterology, Hepatology and Nutrition, 9713 GZ Groningen, The Netherlands.

Amadu Juliana (A)

Academic Pediatric Center Suriname, Academic Hospital Paramaribo, Paramaribo, Suriname.

Classifications MeSH