Research on Quality of Life in Female Patients with Congenital Adrenal Hyperplasia and Issues in Developing Nations

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21 Citations (Scopus)

Abstract

Congenital adrenal hyperplasia (CAH) is the commonest cause of ambiguous genitalia for female newborns and is one of the conditions under the umbrella term of "Disorders of Sex Development" (DSD). Management of these patients require multidisciplinary collaboration and is challenging because there are many aspects of care, such as the most appropriate timing and extent of feminizing surgery required and attention to psychosexual, psychological, and reproductive issues, which still require attention and reconsideration, even in developed nations. In developing nations, however, additional challenges prevail: poverty, lack of education, lack of easily accessible and affordable medical care, traditional beliefs on intersex, religious, and cultural issues, as well as poor community support. There is a paucity of long-term outcome studies on DSD and CAH to inform on best management to achieve optimal outcome. In a survey conducted on 16 patients with CAH and their parents in a Malaysian tertiary center, 31.3% of patients stated poor knowledge of their condition, and 37.5% did not realize that their medications were required for life. This review on the research done on quality of life (QOL) of female patients with CAH aims: to discuss factors affecting QOL of female patients with CAH, especially in the developing population; to summarize the extant literature on the quality of life outcomes of female patients with CAH; and to offer recommendations to improve QOL outcomes in clinical practice and research.

Original languageEnglish
Pages (from-to)296-304
Number of pages9
JournalJournal of Pediatric and Adolescent Gynecology
Volume26
Issue number6
DOIs
Publication statusPublished - Dec 2013

Fingerprint

Congenital Adrenal Hyperplasia
Developing Countries
Quality of Life
Disorders of Sex Development
Research
Poverty
Developed Countries
Parents
Outcome Assessment (Health Care)
Newborn Infant
Psychology
Education
Population

Keywords

  • Ambiguous genitalia
  • Congenital adrenal hyperplasia
  • Disorder of sex development
  • Endocrine
  • Feminizing genitoplasty
  • Gender Identity
  • Quality of life

ASJC Scopus subject areas

  • Obstetrics and Gynaecology
  • Pediatrics, Perinatology, and Child Health

Cite this

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title = "Research on Quality of Life in Female Patients with Congenital Adrenal Hyperplasia and Issues in Developing Nations",
abstract = "Congenital adrenal hyperplasia (CAH) is the commonest cause of ambiguous genitalia for female newborns and is one of the conditions under the umbrella term of {"}Disorders of Sex Development{"} (DSD). Management of these patients require multidisciplinary collaboration and is challenging because there are many aspects of care, such as the most appropriate timing and extent of feminizing surgery required and attention to psychosexual, psychological, and reproductive issues, which still require attention and reconsideration, even in developed nations. In developing nations, however, additional challenges prevail: poverty, lack of education, lack of easily accessible and affordable medical care, traditional beliefs on intersex, religious, and cultural issues, as well as poor community support. There is a paucity of long-term outcome studies on DSD and CAH to inform on best management to achieve optimal outcome. In a survey conducted on 16 patients with CAH and their parents in a Malaysian tertiary center, 31.3{\%} of patients stated poor knowledge of their condition, and 37.5{\%} did not realize that their medications were required for life. This review on the research done on quality of life (QOL) of female patients with CAH aims: to discuss factors affecting QOL of female patients with CAH, especially in the developing population; to summarize the extant literature on the quality of life outcomes of female patients with CAH; and to offer recommendations to improve QOL outcomes in clinical practice and research.",
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