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Co-morbidities Leading to Mortality or Hospitalization in Children with Down Syndrome and its Effect on the Quality of Life of their Parents

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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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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.

Author information

Authors and Affiliations

  1. Department of Pediatrics, Maulana Azad Medical College, New Delhi, 110002, India

    Seema Kapoor & Ankur Singh

  2. Maulana Azad Medical College, New Delhi, India

    Swati Bhayana

  3. Department of Community Medicine, Maulana Azad Medical College, New Delhi, India

    Jugal Kishore

Authors
  1. Seema Kapoor
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  2. Swati Bhayana
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  3. Ankur Singh
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  4. Jugal Kishore
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Corresponding author

Correspondence to Seema Kapoor.

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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

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