Help-seeking Behavior of Disorders of Sex Development Patients in Palembang, Indonesia
Main Article Content
Introduction. Disorders of Sex Development (DSD) is a congenital disorder in which there is atypical chromosomal, gonadal, or anatomical sex development. Children with DSD are often brought to the hospital too late for care due to limited knowledge about this condition among medical practitioners. Early diagnosis is important to improve prognosis and minimize complications and comorbidities of DSD patients. Methods. This study is a descriptive observational study with a cross-sectional approach through interviews and data collection from medical records of Dr. Mohammad Hoesin Palembang Hospital in 2020 - 2023. Results. In this study, it was found that the infancy age group (28 days - 1 year) was the most common age of arrival of patients to the hospital (29%) and the most common main complaint was clitoral enlargement (19.4%). Conclusion. This study found a wide variation in patients’ chief complaints, which makes the age of arrival of DSD patients to the hospital still quite late.
Keywords:
Help-seeking behavior
Disorders of sex development
Chief complaints
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2. García-Acero M, Moreno O, Suárez F, Rojas A. Disorders of Sexual Development: Current Status and Progress in the Diagnostic Approach. Curr Urol. 2020;13:169–78.
3. Acién P, Acién M. Disorders of Sex Development: Classification, Review, and Impact on Fertility. J Clin Med. 2020;9:3555.
4. Van Zutphen AR, Werler MM, Browne MM, Romitti PA, Bell EM, McNutt LA, et al. Maternal hypertension, medication use, and hypospadias in the national birth defects prevention study. Obstetrics and Gynecology. 2014;123:309–17.
5. Wan Y, Yu R, Luo J, Huang P, Zheng X, Sun L, et al. A novel DEAH-box helicase 37 mutation associated with differences of sex development. Front Endocrinol (Lausanne). 2023;14:1059159.
6. Amolo P, Laigong P, Omar A, Drop S. Etiology and Clinical Presentation of Disorders of Sex Development in Kenyan Children and Adolescents. Int J Endocrinol. 2019;2019:1–9.
7. Rochmah N, Faizi M, Andriani IR, Pasulu SS. Case Report: Medical Aspect, Growth, and Quality of Life in Children with 46,XX Testicular Disorder of Sex Development (DSD). Folia Medica Indonesiana. 2018;54:228.
8. Alsayed SE. Updates in Oral Management of Dehydration and Electrolyte Disturbance in Infants and Children: A Systematic Review. Saudi Journal of Medical and Pharmaceutical Sciences. 2024;10:110–6.
9. Gürbüz F, Alkan M, Çelik G, Bişgin A, Çekin N, Ünal İ, et al. Gender Identity and Assignment Recommendations in Disorders of Sex Development Patients: 20 Years’ Experience and Challenges. J Clin Res Pediatr Endocrinol. 2020;12:347–57.
10. Rochmah N, Faizi M, Kusumastuti NP, Samadhi LFM, Deakandi WY. Diagnosis and Management of Adrenal Crisis in 46XX Congenital Adrenal Hyperplasia Infant. Folia Medica Indonesiana. 2022;58:273–9.
11. McCann-Crosby B. Ambiguous Genitalia: Evaluation and Management in the Newborn. Neoreviews. 2016;17:e144–53.
12. Beck M de S El, Germano CW, Barros BA, Andrade JGR, Guaragna-Filho G, Paula GB, et al. Why pediatricians need to know the disorders of sex development: experience of 709 cases in a specialized service. J Pediatr (Rio J). 2020;96:607–13.
13. Karita D, Romdhoni MF. Hubungan Usia dan Berat Badan Dengan Ukuran Lingkar Penis Anak Menggunakan O-Meter: Sirkumsisi Metode Klem. Herb-Medicine Journal. 2018;1.
14. Nordenström A. Puberty in individuals with a disorder of sex development. Curr Opin Endocr Metab Res. 2020;14:42–51.
15. Ediati A, Faradz SMH, Juniarto AZ, van der Ende J, Drop SLS, Dessens AB. Emotional and behavioral problems in late-identified Indonesian patients with disorders of sex development. J Psychosom Res. 2015;79:76–84.
16. Wizemann TM, Pardue ML. Every Cell Has a Sex. In: Exploring the Biological Contributions to Human Health. Washington, D.C.: National Academies Press; 2001.
17. Shawky RM, Nour El-Din SM. Profile of disorders of sexual differentiation in the Northeast region of Cairo, Egypt. Egyptian Journal of Medical Human Genetics. 2012;13:197–205.
18. Grace K, Guerrero-Gonzalez H, Estrada SC. Disorders of Sex Development: A 5-year Review of Patients at a Tertiary Care Hospital. Acta Medica Philippina. 2020;54(4).
19. Maritska Z, Prananjaya BA, Prilishia ZA, Parisa N, Riza S. Geographical variations of Disorders of Sex Development (DSD) in south Sumatera region. Bioscientia Medicina: Journal of Biomedicine and Translational Research. 2019;3(3):24-33.
20. Siregar AAT, Dastamuar S, Theodorus T, Hendry M. Prevalence of hypospadias patients with undescended testis. International Journal of Public Health Science (IJPHS). 2019;8:158.
21. El-Sherbiny M. Disorders of sexual differentiation: II. Diagnosis and treatment. Arab J Urol. 2013;11:27–32.
22. Kohva E, Miettinen PJ, Taskinen S, Hero M, Tarkkanen A, Raivio T. Disorders of sex development: timing of diagnosis and management in a single large tertiary center. Endocr Connect. 2018;7:595–603.
