利用 "不采纳、放弃、推广、普及和可持续性"(NASSS)框架评估苏里南新生儿镰状细胞病筛查试点项目

IF 4 Q1 GENETICS & HEREDITY International Journal of Neonatal Screening Pub Date : 2024-07-04 DOI:10.3390/ijns10030046
Ming-Jan Tang, J. Roosblad, John Codrington, Marjolein Peters, Aartie Toekoen, P. V. van Rheenen, Amadu Juliana
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引用次数: 0

摘要

早期发现镰状细胞病(SCD)对于降低患病儿童的死亡率至关重要。苏里南目前还没有针对 SCD 的新生儿筛查计划(NSP)。我们开展了一项试点计划,以评估该计划的可扩展性。我们从五个出生中心采集了干血斑,并对其进行了电泳分析。我们使用未采用、放弃、扩大、传播和可持续性框架对计划的可扩展性进行了评估。六个领域(疾病、技术、价值主张、采用者系统、组织和社会系统)的挑战被分级为简单😊、复杂😐或复杂😢。事实证明,主要面对复杂挑战的计划很难实施,而主要面对复杂领域的计划可能无法实现。在成功筛查的 5185 名新生儿中,有 33 人(0.64%)被检测出患有 SCD。大多数领域被归类为简单或复杂。在苏里南,疾病检测和筛查技术的适用性得到了证实,家长的接受度也很高。在计划实施过程中,医务人员只需对日常工作稍作调整。复杂挑战包括依赖外部供应商进行技术维护,确保受影响的新生儿及时获得儿科专业护理,以及确保可持续的财政资金。扩大规模具有挑战性,但也是可行的,特别是要有针对性地关注已确定的复杂挑战。
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Evaluation of the Newborn Screening Pilot for Sickle Cell Disease in Suriname Using the Non-Adoption, Abandonment, Scale-Up, Spread, and Sustainability (NASSS) Framework
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.
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来源期刊
International Journal of Neonatal Screening
International Journal of Neonatal Screening Medicine-Pediatrics, Perinatology and Child Health
CiteScore
6.70
自引率
20.00%
发文量
56
审稿时长
11 weeks
期刊最新文献
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