QUALITY OF LIFE IN CHILDREN AND ADOLESCENTS WITH CONGENITAL ADRENAL HYPERPLASIA

  • Fawad Suleman Aga Khan University
  • Noshaba Noor National Institute of Child Health, Karachi
  • Samiya Iqbal Department of Psychiatry, The Aga Khan University, Karachi
  • Zainab Sher Department of Psychiatry, The Aga Khan University, Karachi
  • Mohsina Noor National Institute of Child Health, Karachi
Keywords: Congenital Adrenal Hyperplasia (CAH), Quality of life, Endocrine disorder, Children and Adolescents.

Abstract

BACKGROUND: Congenital Adrenal Hyperplasia (CAH) is a hereditary endocrine condition, defined by insufficiency of enzymes that cause abnormalities in adrenal steroidogenesis, resulting in adrenal insufficiency and hyperandrogenism. In adults, Congenital Adrenal Hyperplasia has been linked to a lower quality of life (QoL). However, research in children has yielded inconsistent results. Therefore, this study was conducted to investigate the impact of CAH on the quality of life of children and adolescents.

OBJECTIVE: To assess the Quality of Life of children and adolescents with Congenital Adrenal Hyperplasia (CAH).

METHODS: It was a descriptive cross-sectional study with six months duration. We enrolled all children and adolescents in the range of 8 to 18 years of age who have been diagnosed with CAH. The World Health Organization Quality of Life-BREF (QOL-BREF) instrument was used for data collection. Four health domains including physical, psychological, social, and environmental areas were assessed, with higher transformed scores indicating better QOL. Data was entered on SPSS Version 23.

RESULTS: Our study population comprised of 30 children and adolescents with a mean age of 12.75 ±3.23 years. Mean transformed scores of physical, psychological, social, and environmental health domains were 31.37±12.15, 45.13±12.50, 34.8±20.49 and 37.6± 12.06 respectively.

CONCLUSION: The quality-of-life score in our population was relatively low in the physical and social domains of health as compared to psychological and environmental health domains. Larger community-based studies are required to further elaborate the causes and remedies of poor quality of life in children and adolescents.

Downloads

Download data is not yet available.

References

1. Bhanji R. Khan A H. Balouch I L. Sabir S. Nazir Z. Billoo A G. Profile of Children with Congenital Adrenal Hyperplasia - a Hospital Study. J Pak Med Assoc. Dec 2004;10(54):
2. Ucar A. Cakiroglu FP. Aral N. A Study on the Relationship between Body Image Acceptance and Self-esteem among Adolescents of Normal and Abnormal Body Weight. Int J L. Nov 2010;8(17):252-253.
3. Yadav Y P. Understanding the Body Image of Adolescents: A Psychological Perspective. Int. j. appl. res. 2017;3(6):588-594.
4. Joseph A A. Kulshreshta B. Shabir I. Marumudi E. George T S. Sagar R. Mehta M. Ammini A C. Gender Issues and related Social Stigma Affecting Children and adolescents with a Disorder of Sex Development in India. Arch Sex Behav. 2017;2(46):361-367.
5. Stuttgart J V T KG. Psychosocial Factors in Disorders of Sex Development in a Long-Term Perspective: What Clinical Opportunities are there to Intervene. Harm Metab Res 2015;47(05):351-356.
6. Blum R, Boyden J. Understand young people in low-income countries. Int J Sci Nat. 2018;(554):435
7. Verhees MJ, Engels M, Span PN, Sweep FC, Van Herwaarden AE, Falhammar H, Nordenström A, Webb EA, Richter-Unruh A, Bouvattier C, Perrière AB. Quality of Life in Men With Congenital Adrenal Hyperplasia Due to 21-Hydroxylase Deficiency. Frontiers in endocrinology. 2021 Mar 19;12:216.
8. Carroll L, Graff C, Wicks M, Jones T, Thomas AD. Health-related quality of life of children with congenital adrenal hyperplasia: A mixed methods study. Journal of Pediatric Nursing. 2021 May 1;58:88-94.
9. Ekbom K, Strandqvist A, Lajic S, Hirschberg A, Falhammar H, Nordenström A. The impact of adherence and therapy regimens on quality of life in children and adolescents with congenital adrenal hyperplasia. Clinical Endocrinology. 2022 May;96(5):666-79
10. Skevington SM, McCrate FM. Expecting a good quality of life in health: assessing people with diverse diseases and conditions using the WHOQOL-BREF. Health Expect: Int J Public Participation Health Care Health Policy (2012) 15(1):49–62. doi: 10.1111/j.1369-7625.2010.00650.
11. Vijayan R, Bhavani N, Pavithran PV, Nair V, Menon UV, Menon AS, Abraham N, Bhadran K, Narayanan P, Kumar H. Metabolic profile, cardiovascular risk factors and health-related quality of life in children, adolescents and young adults with congenital adrenal hyperplasia. Journal of Pediatric Endocrinology and Metabolism. 2019 Aug 1;32(8):871-7
12. Espinosa-Herrera F, Espín E, Tito-Álvarez AM, Beltrán LJ, Gómez-Correa D, Burgos G, Llamos A, Zurita C, Rojas S, Dueñas-Espín I, Cueva-Ludeña K. A report of congenital adrenal hyperplasia due to 17α-hydroxylase deficiency in two 46, XX sisters. Gynecological Endocrinology. 2020 Jan 2;36(1):24-9.
13. Alahdal H, Alshanbari H, Almazroa HS, Alayesh SM, Alrhaili AM, Alqubi N, Alzamil FF, Albassam R. Consanguinity, awareness, and genetic disorders among female university students in Riyadh, Saudi Arabia. Journal of Biochemical and Clinical Genetics. 2021 Jan 20;4(1):27-
14. ICMR Task Force on Inherited Metabolic Disorders. Newborn screening for congenital hypothyroidism and congenital adrenal hyperplasia. The Indian Journal of Pediatrics. 2018 Nov;85:935-40.
15. Mansoor S, Baloch MH, Khan Z, Ashraf A. A clinical account of Pakistani children suffering from congenital adrenal hyperplasia. J Pak Med Assoc. 2023 Feb;73(2):366-369. doi: 10.47391/JPMA.5234. PMID: 36800727.
Published
2024-09-28
How to Cite
1.
Suleman F, Noor N, Iqbal S, Sher Z, Noor M. QUALITY OF LIFE IN CHILDREN AND ADOLESCENTS WITH CONGENITAL ADRENAL HYPERPLASIA. J Pak Psychiatr Soc [Internet]. 2024Sep.28 [cited 2024Nov.21];21(03). Available from: https://jpps.pk/index.php/journal/article/view/382