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Quality of life evaluation in juveniles with disorders of sexual development

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Abstract

Purpose

To evaluate the quality of life of 6–11-year-old children and 12–17-year-old adolescents with disorders of sexual development (DSDs) following reparative surgery.

Methods

Fifty pediatric patients with DSDs, including 32 cases of congenital adrenal hyperplasia, 2 cases of complete androgen insensitivity syndrome, 1 case of partial androgen insensitivity syndrome, 6 cases of complete testicular dysgenesis, 7 cases of partial testicular dysgenesis, and 2 cases of ovotesticular DSD, with complete follow-up data, were recruited. Healthy control subjects (matched for age, gender, and living environment) served as controls. Physical, socio-emotional, and psychological evaluations were performed.

Result

Among 50 patients, eight boys and two girls (designated by social gender) were unsatisfied with the morphology of their external genitalia. Social limitations were observed in 4/8 (50 %) of the boys and in 12/42 (28.6 %) of the girls. Psychological problems were significantly more prevalent in the DSD group than in the control group (p < 0.05).

Conclusions

The quality of life of pediatric patients with DSDs was impaired to varying degrees following reparative surgery.

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References

  1. Allen L (2009) Disorders of sexual development. Obstet Gynecol Clin North Am 36:25–45

    Article  PubMed  Google Scholar 

  2. Öçal G (2011) Current concepts in disorders of sexual development. J Clin Res Pediatr Endocrinol 3:105–114

    Article  PubMed  Google Scholar 

  3. Dreger A (1999) Ambiguous sex or ambivalent medicine. Hastings Cent Rep 28:24–35

    Google Scholar 

  4. Low Y, Hutson JM (2003) Rules for clinical diagnosis in babies with ambiguous genitalia. J Paediatr Child Health 39:406–413

    Article  PubMed  CAS  Google Scholar 

  5. Kolon TF (2008) Disorders of sexual development. Curr Urol Rep 9:172–177

    Article  PubMed  Google Scholar 

  6. Schutzmann K et al (2009) Psychological distress, self-harming behavior, and suicidal tendencies in adults with disorders of sex development. Arch Sex Behav 38:16–33

    Article  PubMed  Google Scholar 

  7. Slijper FM et al (1998) Long-term psychological evaluation of intersex children. Arch Sex Behav 27:125–144

    Article  PubMed  CAS  Google Scholar 

  8. Pasterski V, Prentice P, Hughes IA (2010) Impact of the consensus statement and the new DSD classification system. Best Pract Res Clin Endocrinol Metab 24:187–195

    Article  PubMed  CAS  Google Scholar 

  9. Sandberg DE et al (2001) Psychosocial adaptation of middle childhood boys with hypospadias after genital surgery. J Pediatr Psychol 26:465–475

    Article  PubMed  CAS  Google Scholar 

  10. Zhang XS, Chen MZ (2007) Sexual abnormalities in children: a report of 37 cases. Chin J Pediatr Surg 18:282–284

    Google Scholar 

  11. Achenbach TM, Edlebrock C (1986) Manual for the teacher’s report form and teacher version of the child behavior profile. Burlington

  12. Warne GL, Raza J (2008) Disorders of sex development (DSDs), their presentation and management in different cultures. Rev Endocr Metab Disord 9:227–236

    Article  PubMed  Google Scholar 

  13. Money J (1970) Matched Pairs of Hermaphrodites: Behavioral Biology of Sexual Differentiation from Chromosomes to Gender Identity. Eng Sci 33:34–39

    Google Scholar 

  14. Miller MA, Grant DB (1997) Severe hypospadias with genital ambiguity: adult outcome after staged hypospadias repair. Br J Urol 80:485–488

    Article  PubMed  CAS  Google Scholar 

  15. Kuhnle U, Bullinger M, Schwarz HP (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. Eur J Pediatr 154:708–716

    Article  PubMed  CAS  Google Scholar 

  16. Diamond M, Sigmundson HK (1997) Management of intersexuality. Guidelines for dealing with persons with ambiguous genitalia. Arch Pediatr Adolesc Med 151:1046–1050

    Article  PubMed  CAS  Google Scholar 

  17. Aaronson IA (2001) The investigation and management of the infant with ambiguous genitalia: a surgeon’s perspective. Curr Probl Pediatr 31:168–194

    Article  PubMed  CAS  Google Scholar 

  18. Diamond M, Sigmundson HK (1997) Sex reassignment at birth. Long-term review and clinical implications. Arch Pediatr Adolesc Med 151:298–304

    Article  PubMed  CAS  Google Scholar 

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Conflict of interest

There is no conflict of interest with any financial organization regarding the material discussed in the manuscript.

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Authors and Affiliations

  1. Department of Pediatric Surgery, Tongji Hospital, Tongji Medical College Huazhong University of Science and Technology, Wuhan, 430030, Hubei, China

    Dan Zhu, Luhong Hu, Xiaoting Wan, Honglin Li, Qian You, Liping Gao & Jiexiong Feng

Authors
  1. Dan Zhu
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  2. Luhong Hu
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  3. Xiaoting Wan
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  4. Honglin Li
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  5. Qian You
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  6. Liping Gao
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  7. Jiexiong Feng
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Corresponding author

Correspondence to Jiexiong Feng.

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Zhu, D., Hu, L., Wan, X. et al. Quality of life evaluation in juveniles with disorders of sexual development. Pediatr Surg Int 28, 1119–1123 (2012). https://doi.org/10.1007/s00383-012-3182-7

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  • DOI: https://doi.org/10.1007/s00383-012-3182-7

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