الفهرس 
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Abstract
Down syndrome (DS) is a chromosomal abnormality which is caused by the presence of a third copy of chromosome 21 or a part of it (trisomy 21; +21).
As regards to the genetic disorders, DS is the most common cause of ID and developmental delay in general.
There are different associated health problems in children with DS as C.H.D, neurosensory problems, respiratory problems, developmental delay, feeding problems, blood disorders and thyroid dysfunction.
HRQOL is a multi-dimensional concept that comprises domains related to physical, mental, emotional, and social functioning. It goes beyond direct measures of population health, life expectancy, and causes of death, and focuses on the effect health status has on quality of life.
The aim of the present work was to assess the HRQOL of under five children with DS and some related factors.
The study was a case series one carried out in the genetics clinic in Alexandria University Children Hospital (Smouha), Alexandria targeting under five children with DS attending the previously mentioned setting, their mothers and their medical records.
The calculated sample size was 267. It was calculated using Open Epi program assuming degree of precision 6% and suggested frequency of poor HRQOL (50%).
The sample was recruited by visiting the clinic 6 days / week and checking the medical records and mothers of eligible children with DS.
Data collection was conducted using the following tools:
I – An interview questionnaire will be used to collect data from the care givers includes:
1- Socio-demographic data of the children with DS and their caregivers.
2- Medical history of the children such as congenital heart disease, leukemia, Thyroid disorders and hearing loss….etc.
3- Information about health care utilization of the children and their caregivers (mostly parents).
4- Arabic version of TAPQOLscale.
II – Review of Medical records for health problems (e.g. congenital heart disease, seizures, blood disorders, …. etc.).
III- Clinical Examination (weighing of the child and examination for oral health problems).
Data entry and statistical analysis were conducted using the IBM SPSS software, version 20.0
The main results of this study could be summarized as follows:
The study sample included 267 under 5 children with DS; more than half of them (54.7%) were males.
Less than one third (30.3%) of the studied sample in the age group to
6-< 1 year. The mean age of the studied sample was (17.69 ± 14.61) months.
The mean age of the mothers and fathers of the studied sample were (34.86±7.47) and (40.22±9.63) years respectively.
Near half of the sampled children (44.9%) had medium socioeconomic status. Only 10.5% of the sampled children had low socioeconomic status. 44.6% of the sampled children had high socioeconomic condition.
CHD were the most common reported health problems representing (83.1%) of the sampled children particularly septal defects as ASD (34.7%) and PFO(30.2%). Also, musculoskeletal disorders were common health problems as it was reported (82.0%) specifically motor delay (74.9%). The other health problems encountered among the studied sample were oral (77.5%) and gastrointestinal health problems (69.7%). On the other hand, the least reported health problems were testicular problems (10.1%).
The mean % score of the sampled children as regards to the overall quality of life was 77.16 ± 12.95%. Regarding physical functioning domain, the mean % score of the sampled children was 74.44 ± 14.91. As regards to social functioning domain, the mean % score of the sampled children was 71.52±16.72. Regarding the cognitive functioning domain (communication scale), the mean % score of the sampled children was 47.98±12.87. Regarding emotional functioning domain, the mean % score of the sampled children was 85.70 ± 14.15%.
More than half of the sampled children (59.6%) had good HRQOL. More than one third of the sampled children (37.1%) had fair HRQOL. Only 3.4% of the sampled children had poor HRQOL.
Near two-thirds (62.5%) of the sampled children with medium socioeconomic status, had good HRQOL.
The overall HRQOL score was highest for children who had no musculoskeletal, oral, gastrointestinaltract and blood disorders (82.10±11.90, 86.53±8.96, 79.85±13.78 and 78.71±12.84) respectively than children who had those disorders (74.70±12.78, 75.70±12.88, 75.99±12.43 and76.90±12.43).