Quality of Life in Children with Disorders of Sex Development

Nalini M Selveindran, Syed Zulkifli Syed Zakaria, Muhammad Yazid Jalaludin, Rahmah Rasat

Research output: Contribution to journalArticle

1 Citation (Scopus)

Abstract

Background/Aims: Disorders of sex development (DSD) are a heterogeneous group of rare conditions. Evidence-based treatment is challenged by a lack of clinical longitudinal outcome studies. We sought to investigate the quality of life of children with DSD other than congenital adrenal hyperplasia. Methods: The participants (aged 6–18 years) were 23 patients raised as males and 7 patients raised as females. Control data were obtained from representatives of the patients’ siblings matched for age and gender. The Pediatric Quality of Life InventoryTM Version 4.0 (PedsQL) Generic Core Scales were used as the study tool. Results: In comparison with the reference data, the patient group had significantly lower overall PedsQL (p < 0.01) and school functioning (p < 0.01) scores. Also, the total PedsQL score was significantly lower in patients with DSD who were of female social sex as compared to the controls who were females. Family income, surgical procedures, degree of virilization, and mode of puberty did not influence the PedsQL scores. Conclusion: This study revealed a poorer quality of life for patients with DSD as compared to the age-matched control group. This highlights the need for a skilled multidisciplinary team to manage this group of patients.

Original languageEnglish
JournalHormone Research in Paediatrics
DOIs
Publication statusAccepted/In press - 29 Sep 2017

Fingerprint

Disorders of Sex Development
Quality of Life
Virilism
Patient Advocacy
Congenital Adrenal Hyperplasia
Puberty
Longitudinal Studies
Siblings
Research Design
Outcome Assessment (Health Care)
Pediatrics
Control Groups

Keywords

  • Children
  • Disorders of sex development
  • PedsQL questionnaire
  • Quality of life

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Endocrinology, Diabetes and Metabolism
  • Endocrinology

Cite this

Quality of Life in Children with Disorders of Sex Development. / M Selveindran, Nalini; Syed Zakaria, Syed Zulkifli; Jalaludin, Muhammad Yazid; Rasat, Rahmah.

In: Hormone Research in Paediatrics, 29.09.2017.

Research output: Contribution to journalArticle

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