ESPE Abstracts (2024) 98 P3-4

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

Bridging Gaps in Congenital Adrenal Hyperplasia Care: Insights from General Practitioners' Knowledge, Attitudes, and Experiences in Indonesia

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


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


Introduction: General practitioners (GP) are often the first point of contact for patients presenting with symptoms of congenital adrenal hyperplasia (CAH). With a limited number of pediatricians and pediatric endocrinologists as well as the upcoming universal implementation of CAH newborn screening (NBS) in Indonesia, the role of GPs in the diagnosis and emergency management of CAH cannot be overstated. This is the first study to explore the knowledge, attitude and experience of GPs towards CAH in Indonesia.

Methods: A new questionnaire was developed by the research team (HAP, ANI) with two senior pediatric endocrinologists (AU, AP) and a public health expert (HH). Validity and reliability of the questionnaire were assessed using Pearson Correlation and Cronbach-α respectively. The final questionnaire, consisting of a total of 30 items, 10 items each for knowledge, attitude and experience, was disseminated to GPs across Indonesia using Google Form. Potential factors affecting the knowledge of respondents including years after graduation, years working as G P, experience working in emergency room, type of healthcare facility and experience managing CAH cases were assessed. Statistical analysis was done using IBM SPSS version 25.0 including descriptive statistics, Spearman correlation, and χ2 test.

Results: A total of 512 respondents (67% female) from 62/89 faculties of medicine in Indonesia from 35 out of 38 provinces participated in this study (Median age 27 years, range 22-89). We found that a majority of respondents had poor knowledge (52.6%), good attitude (87.3%) and poor experience (91%) concerning CAH. One quarter of respondents (25.7%) reported that they never had a lecture on CAH during their medical education and only few have encountered CAH cases during their clinical training (28.6%) and during their practice as a GP (16.6%). Physical examination of genitalia in the neonate to identify disorders of sexual development (DSD) is not routinely performed in Indonesia, with 42.2% of respondents stating that this is not part of their routine practice. There were no statistically significant associations found among the factors assessed.

Conclusion: With poor knowledge and experience but a good attitude towards CAH, a comprehensive program aim ed at improving the skills of GPs to diagnose and manage CAH is urgently needed beginning as early as the medical education program. Genital examination of the neonate should be a specific focus. With Indonesia expanding NBS to include CAH and limited exposure to clinical cases, alternative strategies such as seminars, social media awareness and additional training must be enforced.

Volume 98

62nd Annual ESPE (ESPE 2024)

Liverpool, UK
16 Nov 2024 - 18 Nov 2024

European Society for Paediatric Endocrinology 

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