Indian journal of pediatrics · 2014
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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Kapoor Seema, Bhayana Swati, Singh Ankur, Kishore Jugal
Аннотация
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.
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.