Towards Universal Congenital Adrenal Hyperplasia Newborn Screening in Indonesia: Knowledge, Perspectives and Experience of Pediatric Residents and Pediatricians

Agustini Utari; Puteri Helena Arnetta; Insani Annisa Nur; Herqutanto; Ghaisani Fadiana; Diane Stafford; Jean-Pierre Chanoine; Aman Pulungan

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ESPE Abstracts (2024) 98 P3-3

ESPE2024 Poster Category 3 Adrenals and HPA Axis (22 abstracts)

Towards Universal Congenital Adrenal Hyperplasia Newborn Screening in Indonesia: Knowledge, Perspectives and Experience of Pediatric Residents and Pediatricians

Agustini Utari ^1,2 , Helena Arnetta Puteri ³ , Annisa Nur Insani ⁴ , Herqutanto Herqutanto ⁵ , Ghaisani Fadiana ⁶ , Diane Stafford ^1,7 , Jean-Pierre Chanoine ^1,8 & Aman Pulungan ⁶

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¹Global Pediatric Endocrinology and Diabetes, Vancouver, Canada. ²Department of Pediatrics, Faculty of Medicine, Universitas Diponegoro, Semarang, Indonesia. ³Faculty of Medicine, Universitas Indonesia, Jakarta, Indonesia. ⁴Faculty of Medicine, Universitas Pembangunan Nasional Veteran Jakarta, Jakarta, Indonesia. ⁵Department of Community Medicine, Faculty of Medicine, Universitas Indonesia, Jakarta, Indonesia. ⁶Department of Child Health, Faculty of Medicine, Universitas Indonesia, Jakarta, Indonesia. ⁷Division of Endocrinology, Department of Pediatrics, Stanford University School of Medicine, Palo Alto, USA. ⁸Endocrinology and Diabetes Unit, British Columbia Children’s Hospital, Vancouver, Canada

Introduction: As Indonesia begins implementing newborn screening (NBS) for congenital adrenal hyperplasia (CAH), pediatricians must be prepared to promptly and correctly diagnose and manage CAH. The aimof this study was to explore the knowledge, perspectives and experience of Indonesian pediatricians and pediatric residents regarding CAH.

Methods: A cross-sectional electronic survey via Google Form was disseminated during a national webinar conducted by Global Pediatric Endocrinology and Diabetes. The survey consisted of ten knowledge questions and ten questions on experience and challenges. Spearman Correlation Test was used to assess the relationship between factors affecting pediatricians and residents' level of knowledge about CAH.

Results: A total of 416 respondents (pediatric residents: 257, 62%, pediatricians: 159, 38%) from 33 out of 38 provinces in Indonesia participated in this survey. There was a weak negative correlation (r =-0.111, P <0.05) between respondent’s age and their level of knowledge and a weak positive correlation between respondents’ experience in treating CAH cases during their career and their level of knowledge (r =0,222, P <0.05). Nearly a quarter of respondents had never managed a patient with CAH during their pediatric residency training. The most common presentations of CAH reported were ambiguous genitalia (55.3%), vomiting (41.1%), and adrenal crisis (36.1%). Our study found that only 15.1% of pediatric residents and pediatricians felt they had sufficient knowledge to manage CAH, with the vast majority (96.6%) echoing the need for more training to anticipate increased cases of CAH through NBS. Aspects that they found lacking in their personal skills and knowledge included clinical diagnosis, management and newborn screening. Other challenges reported in this study are limited access to 17-OHP assay and to medications.

Conclusion: The initiation of NBS for CAH in Indonesia is a significant milestone. However, the results of our study suggest that there is a lack of knowledge and experience in diagnosing and managing CAH. Educational programs must be urgently developed and sustainable access to medications as well as to laboratory investigations must be implemented together with ongoing Quality Assurance evaluation in order to ensure success of the CAH NBS in Indonesia.

Keywords: Congenital Adrenal Hyperplasia, Pediatrician, Resident, Newborn Screening