Journals / Journal of Clinical Research in Pediatric Endocrinology / 2021 / Cilt: 13 - Sayı: 1

Quality of Life and Psychological Well-being in Children and Adolescents with Disorders of Sex Development

Pages
23–33
DOI
—
🏛️Bibliographic metadata and full text access for this article are provided via DergiPark.
DergiPark Record ↗
✨

AI Summary & Key Takeaways

AI Insight
⚡ TL;DR(Too Long; Didn't Read)

Psychiatric support and counseling from a multidisciplinary team are very important for families affected by DSD.

📌 3 Key Takeaways

🎯
Objective & Hypothesis:Objective: The aim of this study was to assess the quality of life (QoL) and psychological well-being in child and adolescent with disorders of sex development (DSD).
📊
Key Findings & Data:Methods: Sixty-two cases, aged 2-18 years, who were followed by a multidisciplinary DSD team were included.
💡
Conclusion & Impact:Psychiatric support and counseling from a multidisciplinary team are very important for families affected by DSD.
🔬Design:Survey & Empirical Study
📍Scope:Comprehensive Sample
⚙️Variables:Domain Parameters

Özet

Objective: The aim of this study was to assess the quality of life (QoL) and psychological well-being in child and adolescent with disorders of sex development (DSD). Methods: Sixty-two cases, aged 2-18 years, who were followed by a multidisciplinary DSD team were included. All participants and their parents were requested the complete the Pediatric Quality Of Life Inventory (PedsQL) and the Strengths and Difficulties Questionnaire. The psychiatric diagnoses of the patients were evaluated according to Schedule for Affective Disorders and Schizophrenia for School-Age Children/Present and Lifetime Turkish Version. Results: There was no significant difference between the 46,XX DSD and 46,XY DSD groups for both child and parent in Total PedsQL score. In the subscale scores, the PedsQL Physical Functionality Score reported by children was significantly lower for the 46,XX DSD group than for the 46,XY DSD group (p=0.01). There was a psychiatric diagnosis in 25.8% of cases. The PedsQL School Functionality Score reported by children in the group with psychiatric diagnosis was significantly lower than the group without psychiatric diagnosis (p=0.018). In the group with psychiatric diagnosis, the PedsQL Total Score and the subscale scores (Emotional Functionality Score, Social Functionality Score, School Functionality) reported by parents were significantly lower than in parents of the group without psychiatric diagnosis. Conclusion: This study emphasized that psychiatric disorders in DSD patients negatively affect the QoL. Psychiatric support and counseling from a multidisciplinary team are very important for families affected by DSD.

🔖

Cite This Article

PİLAN, B. Ş., ÖZBARAN, B., ÇELİK, D., ÖZCAN, T., ÖZEN, S., GÖKŞEN, D., ULMAN, İ., AVANOĞLU, A., TİRYAKİ, S., ONAY, H., ÇOĞULU, Ö., OZKINAY, F., DARCAN, Ş. (2021). Quality of Life and Psychological Well-being in Children and Adolescents with Disorders of Sex Development. Journal of Clinical Research in Pediatric Endocrinology, Cilt: 13 - Sayı: 1, 23–33. https://ajindex.com/articles/347707

📄 Full Text PDF Viewer

📄

PDF görüntüleyici hazırlanıyor...

References (2)

  1. Hughes IA, Houk C, Ahmed SF, Lee PA; LWPES Consensus Group; ESPE Consensus Group. Consensus Statement On Management Of Intersex Disorders. Arc Dis Child 2006;91:554-563. Epub 2006 Apr 19 2. Lee PA, Nordenström A, Houk CP, Ahmed SF, Auchus R, Baratz A, Baratz Dalke K, Liao LM, Lin-Su K, Looijenga LH 3rd, Mazur T, MeyerBahlburg HF, Mouriquand P, Quigley CA, Sandberg DE, Vilain E, Witchel S; Global DSD Update Consortium. Global Disorders Of Sex Development Update Since 2006:
  2. Perceptions, Approach And Care. Horm Res Paediatr 2016;85:158-180. Epub 2016 Jan 28 3. Stout SA, Litvak M, Robbins NM, Sandberg DE. Congenital Adrenal Hyperplasia: Classification Of Studies Employing Psychological Endpoints. Int J Pediatr Endocrinol 2010;2010:191520. Epub 2010 Oct 5 4. Julka S, Bhatia V, Singh U, Northam E, Dabadghao P, Phadke S, Wakhlu A, Warn GL. Quality of Life and Gender Role Behavior in Disorders of Sexual Differentiation in India. J Pediatr Endocrinol Metab 2006;19:879-888. 5. Fayers P, Hays R. Assessing Quality Of Life In Clinical Trials, 2nd. New York, Oxford University Press, 2005. 6. Malouf MA, Inman AG, Carr AG, Franco J, Brooks ML. Health-related quality of life, mental health and psychotherapeutic considerations for women diagnosed with disorder of sexual development: congenital adrenal hyperplasia. Int J Pediatr Endocrinol 2010;2010:253465. Epub 2010 Jun 3 7. Schober JM. Quality-of-life studies in patients with ambiguous genitalia. World J Urol 1999;17:249-252. 8. Amaral RC, Inacio M, Brito VN, Bachega TA, Domenice S, Arnhold IJ, Madureira G, Gomes L, Costa EM, Mendonca BB. Quality of life of patients with 46, XX and 46, XY disorders of sex development. Clin Endocrinol 2015;82:159-164. Epub 2014 Aug 14 9. Lee PA, Houk CP, Ahmed SF, Hughes IA; International Consensus Conference on Intersex organized by the Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology. Consensus statement on management of intersex disorders. International Consensus Conference on Intersex. Pediatrics 2006;118:488-500. 10. Kaufman J, Birmaher B, Brent D, Rao U, Flynn C, Moreci P, Williamson D, Ryan N. Schedule for Aective Disorders and Schizophrenia for School Age Children - Present and Lifetime Version (K-SADS-PL): initial reliability and validity data. J Am Acad Child Adolesc Psychiatry 1997;36:980-988. 11. American Psychiatric Association (APA). Diagnostic and statistical manual of mental disorders, 4th edition-text revision (DSM-IV-TR).