Abstract
Objective
To study factors leading to mortality or hospitalization in children with Down syndrome and its effect on the quality of life of their parents.
Methods
The study was retrospective questionnaire based study conducted over 2 mo period at a genetic outpatient setting of a teaching medical college hospital. Seventy children with suggestive phenotype and confirmed Trisomy 21 on karyotyping were included. An essential criterion was a reasonable understanding of the language to construct history. The primary outcome variable evaluated was the co-morbidity in these children which led to either hospitalization or mortality. Pretested and validated questionnaire was given to parents/primary caregiver and data was constructed with help of previous hospital records or from verbal autopsy in patients who had lost all papers.
Results
The mean age of Down syndrome (DS) patients in study group was 5.09 ± 2.5 y. All cases were diagnosed postnatally at a mean age of 5 y. The major reasons for hospitalization were congenital heart disease (cyanotic/acyanotic), multiple episodes of pneumonia and wheeze associated with lower respiratory infection. Cardiovascular failure was the major reason for mortality. Majority of parents in the study (57.5 %) agreed that there were changes requiring adaptation after the birth of a DS baby while 22.5 % reported this effort to cost them heavily and 3 % quoted that this had changed the life drastically.
Conclusions
Cardiorespiratory system is major cause of morbidity/mortality in cases with DS. Majority of parents accepted the challenge of rearing a DS child but with adaptation.
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References
Patel ZM, Adhia RA. Birth defects surveillance study. Indian J Pediatr. 2005;72:489–91.
Verma IC. Genetic causes of mental retardation in India. In: Hicks EK, Berg JM, eds. The Genetics of Mental Retardation. Dordrecht: Kluwer Academic Publishers; 1988. pp. 99–106.
Kava MP, Tullu MS, Muranjan MN, Girisha KM. Down syndrome: Clinical profile from India. Arch Med Res. 2004;35:31–5
Horwitz N, Ellis J. Paediatric SpRs’ experiences of breaking bad news. Child Care Health Dev. 2007;33:625–30.
Leonard S, Bower C, Petterson B, Leonard H. Survival of infants born with Down’s syndrome: 1980–96. Paediatr Perinat Epidemiol. 2000;14:163–71.
Prefumo F, Ierullo AM, Fulcheri E, Venturini PL, De Biasio P, Thilaganathan B. A newly described thoracic vascular malformation in fetuses with Down syndrome. Ultrasound Obstet Gynecol. 2005;26:218–20.
American Academy of Pediatrics, Committee on Genetics. American Academy of Pediatrics: Health supervision for children with Down syndrome. Pediatrics. 2001;107:442–9.
Mihci E, Akcurin G, Eren E, Kardelen F, Akcurin S, Keser I, et al. Evaluation of congenital heart disease and thyroid abnormalities in children with Down syndrome. Anadolu Kardiyol Derg. 2010;10:440–5.
Miodrag N, Silverberg SE, Urbano RC, Hodapp RM. Deaths among children, adolescents, and young adults with down syndrome. J Appl Res Intellect Disabil. 2013;26:207–14.
Ram G, Chinen J. Infections and immunodeficiency in Down syndrome. Clin Exp Immunol. 2011;164:9–16.
Licastro F, Chiricolo M, Mocchegiani E, Fabris N, Zannoti M, Beltrandi E, et al. Oral zinc supplementation in Down’s syndrome subjects decreased infections and normalized some humoral and cellular immune parameters. J Intellect Disabil Res. 1994;38:149–62.
Rasmussen SA, Wong LY, Correa A, Gambrell D, Friedman JM. Survival in infants with Down syndrome, Metropolitan Atlanta, 1979-1998. J Pediatr. 2006;148:806–12.
Frid C, Drott P, Lundell B, Rasmussen F, Anneren G. Mortality in Down’s syndrome in relation to congenital malformation. J Intellect Disabil Res. 1999;43:234–41.
Lakshminarayana P, Ibrahim S, Venkataraman P, Jagatheesan T, Kamala KG. KAP study on mothers of children with Down syndrome. Indian Pediatr. 1991;28:997–1001.
Chang MY, Hsu LL. The perceptions of Taiwanese families who have children with learning disability. J Clin Nurs. 2007;16:2349–56.
Hsiao CY. Family demands, social support and family functioning in Taiwanese families rearing children with Down syndrome. J Intellect Disabil Res. 2013. doi:10.1111/jir.12052.
Acknowledgments
The authors would like to thank the ICMR for awarding this study in short term studentship. This study was also awarded 2nd prize in Medsicon 2012.
Contributions
SB and AS: Collected the data and were involved in drafting the manuscript; JK: Did statistical analysis of data and conducted the study; SK: Designed the study, edited the manuscript and will act as guarantor for the study.
Conflict of Interest
None.
Role of Funding Source
This study was funded by ICMR short term studentship program.
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Kapoor, S., Bhayana, S., Singh, A. et al. Co-morbidities Leading to Mortality or Hospitalization in Children with Down Syndrome and its Effect on the Quality of Life of their Parents. Indian J Pediatr 81, 1302–1306 (2014). https://doi.org/10.1007/s12098-014-1389-4
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DOI: https://doi.org/10.1007/s12098-014-1389-4