Pulungan Aman Bhakti, Puteri Helena Arnetta, Faizi Muhammad, Hofman Paul Leslie, Utari Agustini, Chanoine Jean-Pierre
Department of Child Health, Faculty of Medicine, Universitas Indonesia, Jakarta 10430, Indonesia.
Global Pediatric Endocrinology and Diabetes, Vancouver, BC V5Z 4R3, Canada.
Int J Neonatal Screen. 2024 Jan 19;10(1):8. doi: 10.3390/ijns10010008.
The expansion of newborn screening (NBS) for congenital hypothyroidism (CH) is essential to reducing the number of preventable intellectual disabilities in children. Because of logistical issues, including geographic extremes, distinct cultures, and 4.8 million births annually, Indonesia has struggled to achieve universal NBS coverage. A national cross-sectional electronic survey was conducted to explore challenges in CH NBS. Responses from 423 healthcare professionals and program administrators across 30 provinces in Indonesia were collected. The major challenges reported were refusal from families (39.2%), newborns being discharged <24 h (38.3%), and limited availability of filter paper (35.9%). The respondents considered refusal from families to be due to fear, while others did not understand the necessity of CH NBS. The vast majority of respondents believed that parents do not have sufficient understanding regarding CH NBS (96.5%). Our study found that only 38.5% of respondents had received formal CH NBS training, with pediatric endocrinologists being the only profession in which all respondents had been trained. Concerted efforts are needed to improve the access to and availability of resources, increase the capacity for sample collection and analysis, empower healthcare professionals, and develop educational resources to promote understanding and acceptance of NBS amongst families.
扩大先天性甲状腺功能减退症（CH）的新生儿筛查（NBS）对于减少儿童可预防智力残疾的数量至关重要。由于包括地域差异、独特文化以及每年480万例出生人口等后勤问题，印度尼西亚在实现新生儿筛查全面覆盖方面面临困难。开展了一项全国性横断面电子调查，以探究先天性甲状腺功能减退症新生儿筛查面临的挑战。收集了印度尼西亚30个省份423名医疗保健专业人员和项目管理人员的回复。报告的主要挑战包括家庭拒绝（39.2%）、新生儿在出生24小时内出院（38.3%）以及滤纸供应有限（35.9%）。受访者认为家庭拒绝是出于恐惧，而其他人则不理解先天性甲状腺功能减退症新生儿筛查的必要性。绝大多数受访者认为家长对先天性甲状腺功能减退症新生儿筛查没有足够的了解（96.5%）。我们的研究发现，只有38.5%的受访者接受过先天性甲状腺功能减退症新生儿筛查的正规培训，儿科内分泌学家是所有受访者都接受过培训的唯一专业。需要共同努力改善资源的获取和供应，提高样本采集和分析能力，增强医疗保健专业人员的能力，并开发教育资源，以促进家庭对新生儿筛查的理解和接受。
