Abstract
Evaluation of psychological distress has received relatively little attention in research on persons with disorders of sex development (DSD). Results of previous studies varied considerably, but most studies did not find increased levels of psychological distress. We conducted a pilot study based on a sample of 37 persons with diverse forms of DSD recruited via various strategies. The Brief Symptom Inventory (BSI) was used to assess self-reported psychological distress. Psychological distress varied broadly across all diagnostic subgroups. Overall, the BSI Global Severity Index indicated higher distress in the sample of persons with DSD compared to a non-clinical norm population of women, with an effect size of d = 0.67. According to predefined BSI criteria, 59% of participants were classified as a clinical case. Self-harming behavior and suicidal tendencies were also assessed and compared to a community based sample of women, including subgroups of traumatized women with a history of physical or sexual abuse. The prevalence rates of self-harming behavior and suicidal tendencies in the DSD sample exceeded the rates of the non-traumatized comparison subgroup, with rates comparable to the traumatized comparison groups of women with physical or sexual abuse. As possible explanations for the higher distress found here compared to most previous studies, differences in measures and sample recruitment are discussed. Our results suggest that adults with DSD are markedly psychologically distressed with rates of suicidal tendencies and self-harming behavior on a level comparable to non-DSD women with a history of physical or sexual abuse, but sample recruitment procedures do not permit a firm generalization.
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Berenbaum, S. A., Bryk, K. K., Duck, S. C., & Resnick, I. M. (2004). Psychological adjustment in children and adults with congenital adrenal hyperplasia. Journal of Pediatrics, 144, 741–746.
Bosinski, H. A. G. (2005). Psychosexuelle Probleme bei Intersex-Syndromen [Psychosexual problems in intersex syndromes]. Sexuologie, 12, 31–59.
Cohen, J. (1988). Statistical power analysis for the behavioral sciences (2nd ed.). Hillsdale, NJ: Lawrence Erlbaum Associates.
Cohen-Kettenis, P. T. (2005). Gender change in 46,XY persons with 5a-reductase-2 deficiency and 17β-hydroxysteroid dehydrogenase-3 deficiency. Archives of Sexual Behavior, 34, 399–410.
Cohen-Kettenis, P. T., & Pfäfflin, F. (2003). Transgenderism and intersexuality in childhood and adolescence: Making choices. Thousand Oaks, CA: Sage.
Derogatis, L. R., & Melisaratos, N. (1983). The Brief Symptom Inventory: An introductory report. Psychological Medicine, 13, 595–605.
Dessens, A. B., Slijper, F. M. E., & Drop, S. L. S. (2005). Gender dysphoria and gender change in chromosomal females with congenital adrenal hyperplasia. Archives of Sexual Behavior, 34, 389–397.
Diamond, M., & Watson, L. A. (2004). Androgen insensitivity syndrome and Klinefelter’s syndrome: Sex and gender considerations. Child and Adolescent Psychiatric Clinics of North America, 13, 623–640.
Franke, G. H. (2000). Brief Symptom Inventory von L. R. Derogatis (Kurzform der SCL-90-R)-Deutsche Version-BSI: Manual [Brief Symptom Inventory from L. R. Derogatis (Short-form of the SCL-90-R)–German Version–BSI: Manual]. Göttingen: Belz Test.
Geisheim, C., Hahlweg, K., Fiegenbaum, W., Frank, M., Schröder, B., & Witzleben, I. (2002). Das Brief Symptom Inventory (BSI) als Instrument zur Qualitätssicherung in der Psychotherapie [The German version of the Brief Symptom Inventory (BSI): Reliability and validity in a sample of outpatient psychotherapy patients]. Diagnostica, 48, 28–36.
Harter, M. C. (2000). Psychische Störungen bei körperlichen Erkrankungen [Mental illness and physical disorders]. Psychotherapie Psychosomatik Medizinische Psychologie, 50, 274–286.
Hines, M., Ahmed, S. F., & Hughes, I. A. (2003). Psychological outcomes and gender-related development in complete androgen insensitivity syndrome. Archives of Sexual Behavior, 32, 93–101.
Hiort, O., Reinecke, S., Thyen, U., Jürgensen, M., Holterhus, P. M., Schön, D., et al. (2003). Puberty in disorders of somatosexual differentiation. Journal of Pediatric Endocrinology & Metabolism, 16, 297–306.
Houk, C. P., Hughes, I. A., Ahmed, S. F., Lee, P. A., & Writing Committee for the International Intersex Consensus Conference Participants (2006). Summary of consensus statement on intersex disorders and their management. International Intersex Consensus Conference. Pediatrics, 118, 753–757.
Hurtig, A. L., & Rosenthal, I. M. (1987). Psychological findings in early treated cases of female pseudohermaphroditism caused by virilizing congenital adrenal hyperplasia. Archives of Sexual Behavior, 16, 209–223.
Kuhnle, U., Bullinger, M., & Schwarz, H. P. (1995). The quality of life in adult female patients with congenital adrenal hyperplasia: A comprehensive study of the impact of genital malformations and chronic disease on female patients life. European Journal of Pediatrics, 154, 708–716.
Mazur, T. (2005). Gender dysphoria and gender change in androgen insensitivity or micropenis. Archives of Sexual Behavior, 34, 411–421.
Mazur, T., Sandberg, D. E., Perrin, M. A., Gallagher, J. A., & MacGillivray, M. H. (2004). Male pseudohermaphroditism: Long-term quality of life outcome in five 46,XY individuals reared female. Journal of Pediatric Endocrinology & Metabolism, 17, 809–823.
Meyer-Bahlburg, H. F. L. (1999). Health-related quality of life in intersexuality. Acta Paediatrica Supplement, 88, 114–115.
Meyer-Bahlburg, H. F. L. (2005). Gender identity outcome in female-raised 46,XY persons with penile agenesis, cloacal exstrophy of the bladder, or penile ablation. Archives of Sexual Behavior, 34, 423–438.
Money, J., Hampson, J. G., & Hampson, J. L. (1956). Sexual incongruities and psychopathology: The evidence of human hermaphroditism. Bulletin of the Johns Hopkins Hospital, 98, 43–57.
Morgan, J. F., Murphy, H., Lacey, J. H., & Conway, G. (2005). Long term psychological outcome for women with congenital adrenal hyperplasia: Cross sectional survey. British Medical Journal, 330, 340–341.
Reinecke, S., Hampel, E., Richter-Appelt, H., Hiort, O., & Thyen, U. (2004). Erfahrungen mit Intersexualität: Ergebnisse einer Interviewstudie mit Eltern und Betroffenen [Experiences with intersexuality: Results of an interview-based study with parents and persons with intersexuality]. Psychotherapie und Sozialwissenschaft, 6, 263–295.
Richter-Appelt, H., Brinkmann, L., & Schützmann, K. (2006). Elterliche Bindung in der Kindheit und psychische Symptombelastung in einer Stichprobe von Erwachsenen mit Intersexualität [Parental bonding in childhood and psychological symptoms in a sample of adults with intersexuality]. Psychotherapie Psychosomatik Medizinische Psychologie, 56, 325–335.
Richter-Appelt, H., & Tiefensee, J. (1996a). Sozial und familiäre Gegebenheiten bei körperlichen Misshandlungen und sexuellen Missbrauchserfahrungen in der Kindheit aus der Sicht junger Erwachsener. Ausgewählte Ergebnisse der Hamburger Studie (Teil 1) [Social and familial aspects in physical abuse and sexual abuse experiences in childhood from the viewpoint of young adults. Selected results of the Hamburg study (1)]. Psychotherapie Psychosomatik Medizinische Psychologie, 46, 367–378.
Richter-Appelt, H., & Tiefensee, J. (1996b). Die Partnerbeziehung der Eltern und die Eltern-Kind-Beziehung bei körperlichen Misshandlungen und sexuellen Missbrauchserfahrungen in der Kindheit aus der Sicht junger Erwachsener. Weitere Ergebnisse der Hamburger Studie (Teil II) [Partnership relations of parents and parent-child relations of physical abuse and sexual abuse experiences in childhood from the viewpoint of young adults. Further results of the Hamburg study (2)]. Psychotherapie Psychosomatik Medizinische Psychologie, 46, 405–418.
Schober, J. M. (1999). Quality-of-life studies in patients with ambiguous external genitalia. World Journal of Urology, 17, 249–252.
Slijper, F. M., Drop, S. L., Molenaar, J. C., & de Muinck Keizer-Schrama, S. M. (1998). Long-term psychological evaluation of intersex children. Archives of Sexual Behavior, 27, 125–144.
Slijper, F. M. E., Frets, P. G., Boehmer, A. L. M., Drop, S. L. S., & Niermeijer, M. F. (2000). Androgen insensitivity syndrome (AIS): Emotional reactions of parents and adult patients to the clinical diagnosis of AIS and its confirmation by androgen receptor gene mutation analysis. Hormone Research, 53, 9–15.
Tiefensee, J. (1997). Der Einfluss der Eltern-Kind-Beziehung auf die Entwicklung von Störungen nach sexuellem Missbrauch [The impact of the parent-child-relationship on the development of disorders after sexual abuse]. Aachen: Shaker.
Warne, G. (2003). Congenital adrenal hyperplasia: Long-term outcome studies. Endocrinologist, 13, 179–181.
Warne, G., Grover, S., Hutson, J., Sinclair, A., Metcalfe, S., Northam, E., et al. (2005). A long-term outcome study of intersex conditions. Journal of Pediatric Endocrinology and Metabolism, 18, 555–567.
Wisniewski, A. B., Migeon, C. J., Meyer-Bahlburg, H. F. L., Berkovitz, G. D., Gearhart, J. P., Rock, J. A., et al. (2003). Long-term outcome of patients with complete androgen insensitivity syndrome or congenital micropenis. Endocrinologist, 13, 187–189.
Zucker, K. J. (2002). Re: Sexual behaviors, sexual orientation and gender identity in adult intersexuals: A pilot study [Letter to the editor]. Journal of Urology, 168, 1507.
Acknowledgments
This study was supported by a grant from the National German Research Foundation (Deutsche Forschungsgemeinschaft), Clinical Research Group 111, “From Gene to Gender” (DFG grant No: Ri 558-2/1-3).
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Schützmann, K., Brinkmann, L., Schacht, M. et al. Psychological Distress, Self-Harming Behavior, and Suicidal Tendencies in Adults with Disorders of Sex Development. Arch Sex Behav 38, 16–33 (2009). https://doi.org/10.1007/s10508-007-9241-9
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DOI: https://doi.org/10.1007/s10508-007-9241-9