Mental Health and Disorders of Sex Development/Intersex Conditions in Iranian Culture: Congenital Adrenal Hyperplasia, 5-α Reductase Deficiency-Type 2, and Complete Androgen Insensitivity Syndrome
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Sixty-one patients (22 patients with congenital adrenal hyperplasia [CAH] with a mean age of 14.86 years [range, 5–23], 20 patients with 5-α reductase deficiency type 2 [5α-RD-2] with a mean age of 19.5 years [range, 5–29], and 19 patients with complete androgen insensitivity syndrome [CAIS] with a mean age of 18.26 years [range, 5–28]) were evaluated using the Kiddie Schedule for Affective Disorders and Schizophrenia, the Structured Clinical Interview for DSM-IV Axis I, Axis II, and the Global Assessment Functioning Scale. All participants were female-assigned at birth. Ten patients (16.4%) transitioned to the male gender. Overall, 68% of patients had one or more lifetime Axis I disorders, including 63.6% of the CAH participants, 90% of 5α-RD-2 participants, and 52.6% of the CAIS participants. The most commonly observed were affective disorders (27.9%), gender identity disorder (27.9%), and anxiety (16.4%). Our study demonstrates that mental health of Iranian patients with DSD is at risk. This might be due to the fact that patients with DSD conditions are mostly treated medically and their mental health is often superficially addressed in developing countries such as Iran, at least in the past. We argue that it is important to pay attention to the mental health issues of patients with DSD and focus on specific issues, which may vary cross-culturally.
KeywordsDisorders of sex development Congenital adrenal hyperplasia 5-α reductase deficiency-2 Complete androgen insensitivity syndrome Mental health Gender dysphoria
We thank our participants and their parents for their time and willingness to be involved in this research.
- Ahmed, S. F., Achermann, J. C., Arlt, W., Balen, A. H., Conway, G., Edwards, Z. L., … Willis, D. (2011). UK guidance on the initial evaluation of an infant or an adolescent with a suspected disorder of sex development. Clinical Endocrinology, 75, 12–26. https://doi.org/10.1111/j.1365-2265.2011.04076.x.
- American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.Google Scholar
- Bin-Abbas, B., Al-Humaida, D., Al-Sagheir, A., Qasem, E., Almohanna, M., & Alzahrani, A. S. (2014). Divergent gender identity in three siblings with 46XX karyotype and severely virilizing congenital adrenal hyperplasia caused by a novel CYP11B1 mutation. Endocrine Practice, 20, e191–e197. https://doi.org/10.4158/ep14179.cr.CrossRefPubMedGoogle Scholar
- Chowdhury, T. K., Laila, K., Hutson, J. M., & Banu, T. (2015). Male gender identity in children with 46,XX DSD with congenital adrenal hyperplasia after delayed presentation in mid-childhood. Journal of Pediatric Surgery, 50, 2060–2062. https://doi.org/10.1016/j.jpedsurg.2015.08.023.CrossRefPubMedGoogle Scholar
- Coleman, E., Bockting, W., Botzer, M., Cohen-Kettenis, P., DeCuypere, G., Feldman, J., … Zucker, K. (2011). Standards of Care for the Health of Transsexual, Transgender, and Gender-Nonconforming People, Version 7. International Journal of Transgenderism, 13, 165–232.Google Scholar
- D’Alberton, F., Assante, M. T., Foresti, M., Balsamo, A., Bertelloni, S., Dati, E., … Mazzanti, L. (2015). Quality of life and psychological adjustment of women living with 46,XY differences of sex development. Journal of Sexual Medicine, 12, 1440–1449. https://doi.org/10.1111/jsm.12884.
- Engberg, H., Butwicka, A., Nordenstrom, A., Hirschberg, A. L., Falhammar, H., Lichtenstein, P., … Landen, M. (2015). Congenital adrenal hyperplasia and risk for psychiatric disorders in girls and women born between 1915 and 2010: A total population study. Psychoneuroendocrinology, 60, 195–205. https://doi.org/10.1016/j.psyneuen.2015.06.017.
- Ghanizadeh, A., Mohammadi, M. R., & Yazdanshenas, A. (2006). Psychometric properties of the Farsi translation of the Kiddie Schedule for Affective Disorders and Schizophrenia-Present and Lifetime Version. BMC Psychiatry, 6, 10. https://doi.org/10.1186/1471-244X-6-10.CrossRefPubMedPubMedCentralGoogle Scholar
- Khorashad, B. S., Aghili, Z., Kreukels, B. P., Hiradfar, M., Roshan, G. M., Afkhamizadeh, M., … Cohen-Kettenis, P. T. (2016). Psychosexual outcome among Iranian individuals with 5alpha-reductase deficiency type 2 and its relationship with parental sexism. Journal of Sexual Medicine, 13, 1629–1641. https://doi.org/10.1016/j.jsxm.2016.09.011.
- Khorashad, B. S., Roshan, G. M., Reid, A. G., Aghili, Z., Hiradfar, M., Afkhamizadeh, M., … Abbaszadegan, M. R. (2017). Sexual orientation and medical history among Iranian people with complete androgen insensitivity syndrome and congenital adrenal hyperplasia. Journal of Psychosomatic Research, 92, 55–62. https://doi.org/10.1016/j.jpsychores.2016.12.002.
- Kolesinska, Z., Ahmed, S. F., Niedziela, M., Bryce, J., Molinska-Glura, M., Rodie, M., … Weintrob, N. (2014). Changes over time in sex assignment for disorders of sex development. Pediatrics, 134, e710–e715. https://doi.org/10.1542/peds.2014-1088.
- Kulshreshtha, B., Philibert, P., Eunice, M., Khandelwal, S. K., Mehta, M., Audran, F., … Ammini, A. C. (2009). Apparent male gender identity in a patient with complete androgen insensitivity syndrome [Letter to the Editor]. Archives of Sexual Behavior, 38, 873–875. https://doi.org/10.1007/s10508-009-9526-2.
- Lauth, B., Arnkelsson, G. B., Magnusson, P., Skarpheethinsson, G. A., Ferrari, P., & Petursson, H. (2010). Validity of K-SADS-PL (Schedule for Affective Disorders and Schizophrenia for School-Age Children-Present and Lifetime Version) depression diagnoses in an adolescent clinical population. Nordic Journal of Psychiatry, 64, 409–420. https://doi.org/10.3109/08039481003777484.CrossRefPubMedGoogle Scholar
- Mattila, A. K., Fagerholm, R., Santtila, P., Miettinen, P. J., & Taskinen, S. (2012). Gender identity and gender role orientation in female assigned patients with disorders of sex development. Journal of Urology, 188, 1930–1934. https://doi.org/10.1016/j.juro.2012.07.018.CrossRefPubMedGoogle Scholar
- Mohammadi, M. R., Ahmadi, N., Salmanian, M., Asadian-Koohestani, F., Ghanizadeh, A., Alavi, A., … Motavallian, A. (2016). Psychiatric disorders in Iranian children and adolescents. Iranian Journal of Psychiatry, 11(2), 87–98.Google Scholar
- Rahbari, L. (2016). Sexuality in Iran. In C. L. Shehan (Ed.), The Encyclopedia of family studies (pp. 1209–1213). New York: Wiley.Google Scholar
- Richter-Appelt, H., Discher, C., & Gedrose, B. (2005). Gender identity and recalled gender related childhood play-behaviour in adult individuals with different forms of intersexuality. Anthropologischer Anzeiger, 63, 241–256.Google Scholar
- Shahrivar, Z., Kousha, M., Moallemi, S., Tehrani-Doost, M., & Alaghband-Rad, J. (2010). The reliability and validity of Kiddie-Schedule for Affective Disorders and Schizophrenia-Present and Life-time Version-Persian Version. Child and Adolescent Mental Health, 15(2), 97–102. https://doi.org/10.1111/j.1475-3588.2008.00518.x.CrossRefGoogle Scholar
- Sharifi, V., Assadi, S. M., Mohammadi, M. R., Amini, H., Kaviani, H., Semnani, Y., … Jalali, M. (2009). A Persian translation of the Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition: Psychometric properties. Comprehensive Psychiatry, 50(1), 86–91. https://doi.org/10.1016/j.comppsych.2008.04.004.
- T’Sjoen, G., De Cuypere, G., Monstrey, S., Hoebeke, P., Freedman, F. K., Appari, M., … Cools, M. (2011). Male gender identity in complete androgen insensitivity syndrome. Archives of Sexual Behavior, 40, 635–638. https://doi.org/10.1007/s10508-010-9624-1.
- Wisniewski, A. B., & Mazur, T. (2009). 46, XY DSD with female or ambiguous external genitalia at birth due to androgen insensitivity syndrome, 5alpha-reductase-2 deficiency, or 17beta-hydroxysteroid dehydrogenase deficiency: A review of quality of life outcomes. International Journal of Pediatric Endocrinology. https://doi.org/10.1155/2009/567430.PubMedPubMedCentralGoogle Scholar