ESPE Yearbook of Paediatric Endocrinology

Brief Summary: This cross-sectional survey of healthcare professionals and administrators in Indonesia investigated the many challenges raised during implementation of a national newborn screening program for congenital hypothyroidism (CH).

Despite initiation of Newborn Screening (NBS) for CH in Indonesia between 2000 and 2010 and expansion more recently, only 2.3% of newborns were screened in 2022. This national survey aimed to identify barriers to wider uptake of CH NBS in Indonesia, receiving responses from 423 healthcare professionals who participated in a webinar focused on improving pediatric endocrine care in low and middle-income countries (LMICs). Questions focused on the challenges experienced and attitudes towards CH NBS.

One third of respondents reported that their facilities had not been able to screen all newborns. The major challenges reported include early discharge of newborns (less than 24 hours after birth) (38.3%), limited availability of filter paper (35.9%), and technical difficulties in sample collection and processing (42.6%). A significant number of parents refuse screening (39.2%) due to fear or a lack of understanding of the importance. The majority of healthcare professionals (96.5%) believe that parents lack sufficient knowledge about CH NBS, impacting the acceptance and success of the program. Only 38.5% of healthcare professionals reported receiving formal training in CH NBS. Most healthcare professionals (87%) felt confident in educating parents about CH NBS, although fewer (69.5%) felt they had sufficient understanding of the CH NBS system in Indonesia. The majority felt CH NBS was beneficial and supported extension to other congenital conditions.

This study highlights significant challenges in achieving universal CH NBS coverage in Indonesia, including logistical, educational, and infrastructural barriers. It is encouraging that there has been a significant increase in government commitment with unpublished data indicating national coverage of 15.53% as of October 2023. The implementation of NBS programs in LMICs is complicated by factors such as public health priorities. The authors emphasize the need for better training for healthcare professionals, better parental education, and enhanced logistical support to increase the program’s effectiveness and coverage across the country.

References: 1. Kopel, J.A global perspective on newborn congenital hypothyroidism screening. Baylor Univ. Med. Cent. Proc. 2020, 33, 137–139.2. LaFranchi, S.H. Worldwide coverage of newborn screening for congenital hypothyroidism-a public health challenge. US Endocrinol. 2014, 10, 115–116.