Concerns and considerations among caregivers of a child with autism in Qatar.

BACKGROUND: Autism impacts the lives of the family looking after a child with the condition in different ways, and forces family members to modify their daily lives to suit their reality. To our knowledge, no previous research investigated concern and considerations of parents/caregivers of children with autism in Qatar or the Arabic speaking Middle Eastern region. METHODS: Caregivers of a child who was between the age of 3 to 17 years old at the time of the study and who was diagnosed with ASD (Autistic Group or AG) were recruited from the two main developmental pediatric and children rehabilitation clinics in Qatar. The control group (non-autism group, or NAG) was represented by caregivers of a non-autistic child between the age of 3 to 17 years old at the time of the study and who were visiting a family clinic of a primary health care facility for routine medical check-up. Data collected from both groups included related to the child (e.g. the child's date of birth, his/her relation to the caregiver, number of siblings, number of hours of sleep in a day, number of hours spent watching television or videos prior to age 3, time spent indoors prior to age 3, absenteeism from school, and use of a nanny to care for the child) and to the caregiver (education level, profession, level of consanguinity using the phylogram method). In addition to these questions, caregivers in the AG were asked specific questions around maternal concern and considerations in respect to the future of their children and the specialized services they receive. RESULTS: Children in the autism group spent more time indoors, watching television, or sleeping than children in the non-autism group. Only around 40% of caregivers in the autism group said they would encourage their child to get married and become a parent when s/he grows up. A number of caregivers of children with autism frequently utilize specialized rehabilitation services; others did express their needs for these services and made comments about having to wait a long time before they were provided with some of the services. Religious faith helped caregivers in accepting having a child with autism. General health-related quality of life did not differ significantly between the caregivers of the two groups, although mental health was consistently poorer in the autism group of caregivers. CONCLUSIONS: The study draws attention to the concerns of the families of children with autism and their expectations about the future of their children. The findings can be used by policy makers in planning services to support these families in Qatar.

Quality of life of caregivers of children with autism in Qatar.

INTRODUCTION: Caring for a child diagnosed with autism could affect the quality of life of the caregiver in various different ways. No previous research has assessed the quality of lives of caregivers of children with autism in Qatar. METHODS: Caregivers of a child with autism between 3 and 17 years old were recruited from child rehabilitation clinics in Qatar. The non-autism group was represented by caregivers of a typically growing child visiting a primary health care facility for a routine medical examination. Data collected from both groups included demographic and quality of life information for caregivers. RESULTS: A total of 98 participants consented to take part in the study. Fifty-six of these were caregivers of a child with autism and 42 were caregivers of a typically growing child. There was no significant difference between quality of life domains between the two groups of caregivers, but caregivers of autistic children rated their health as poor and likely to get worse (p < 0.05). CONCLUSIONS: This study provided some evidence for the impact of caring for a child with autism on the life of the caregiver. The findings should help health policy-makers in Qatar to provide better and more focused support to children with autism and their caregivers.

Exploring the extent of postmenopausal osteoporosis among Saudi Arabian women using dynamic simulation.

The prevalence of postmenopausal osteoporosis among Saudi Arabian women is difficult to estimate because it is a large country with a diverse widely dispersed population. There have been reports of localized prevalence estimates but these are difficult to compare. In the absence of reliable national data, a theoretical approach may be useful. We have extended our mathematical model of the WHO scheme for osteoporosis diagnosis so that it is capable of predicting the prevalence of postmenopausal osteoporosis in a population of women on a year-by-year basis. These calculations are based on the area under a theoretical Gaussian bone mineral density (BMD) distribution bounded by the WHO thresholds for osteoporosis and osteopenia. This simulation approach confirms the pivotal role played by the standard deviation of BMD in the young, healthy normal reference group and it permits the model's sensitivity to other parameters (amplitude and time constant of the postmenopausal decline in BMD) and circumstances (age-related changes in standard deviation) to be accurately quantified: For Saudi Arabian women aged 50-70 yr, we estimate the prevalence of osteoporosis to be approximately 23%. The precise value depends strongly on the underlying standard deviation of BMD across the various age groups, which still remains to be accurately determined within the Saudi Arabian population.

The pattern of Down syndrome among children in Qatar: a population-based study.

BACKGROUND: The objective of the present study was to determine the prevalence pattern of Down Syndrome (DS) in children <5 years of age in the State of Qatar. This is a retrospective descriptive study. The study was conducted in the Hamad General Hospital, Women's Hospital, and Rumailah Hospital (Hamad Medical Corporation). A total of 146 children were reported as having DS during the 6-year period from 1 January 2000 to December 31, 2005. METHODS: The diagnostic classification of definitive DS was made in accordance with criteria based on the International Classification of Disease 10th Revision (ICD-10). The data collected from the medical records included sociodemographic characteristics of the children, genetic and family history, pedigree analysis, and clinical genetic examination. RESULTS: A total of 146 children were diagnosed with DS during the last 6-year period and the prevalence rate is 19.5 per 10,000 live births. Of these, 40.4% were Qataris and 59.6% were non-Qataris. DS was slightly more common in boys (52.7%) than girls (47.3%). Infants <1 year old had the highest frequency of DS (40.4%), followed by children (1-2) years (26%). The most common abnormality was regular trisomy (98%). Also, one-half of the studied children had congenital heart problems (51.7%). There is a significant relationship between DS and maternal age as reported by other studies in other countries. CONCLUSION: The identification of specific types of chromosomal abnormalities in DS children is important as it enables clinicians to accurately counsel the parent regarding the recurrence risk and available options.

The frequency distribution of age at natural menopause among Saudi Arabian women.

OBJECTIVE: Hormonal changes at the menopause are associated with the onset of a number of medical conditions. The distribution of age-at-menopause (AAM) within a given population can, therefore, indicate how the disease prevalence changes with age. The objective of this study was to estimate the distribution of AAM among Saudi Arabian women, in order to predict local trends in the prevalence of osteoporosis. METHODS: Patient age, AAM, medical history and associated information for 858 Saudi Arabian women were extracted from a Dual Energy Absorptiometry database at King Faisal Specialist Hospital and Research Centre, resulting in an AAM distribution for 391 postmenopausal women with natural menopause. This was preprocessed using a Fast Fourier Transform 0.15 cycles/year low-pass filter, eliminating last-digit-preference errors and high frequency noise, and facilitating quantitative comparison with other published results. RESULTS: Mean AAM was 48.94 years (S.E. 0.290 years) with a median of 50 years (25th/75th percentiles: 45 and 53 years, respectively). The AAM distribution was described by a quadruple-Gaussian curve with a major peak at almost 51 years and minor peaks at approximately 36, 44 and 59 years. Although both the central peaks were similar to that observed in other populations (UK, USA and Finland), the early menopause peak at 36 years was larger. The peak over 55 years may be unique to the Kingdom of Saudi Arabia. It may reflect local cultural and childbearing practices. CONCLUSIONS: Although the median menopause age and general shape of the AAM distribution in Saudi Arabia appear similar to that observed in the West, the parameters governing the distribution are different, and there is evidence that it may have a unique fourth peak.

Design and development of an Internet registry for congenital heart defects.

BACKGROUND: Congenital Heart Defects (CHD) are conditions that encompass more than 50 diagnoses and are due to developmental abnormalities early in fetal life. The King Faisal Specialist Hospital and Research Centre in the Kingdom of Saudi Arabia treats approximately 100 new cases per month. We recently developed a new CHD Registry that captures, stores and processes our data via the Internet. METHODS: The Registry was developed using Hypertext Markup Language (HTML), Microsoft Active Server Pages and Microsoft Structured Query Language (SQL). RESULTS: Details of CHD cases are captured in a World Wide Web (WWW) Registry, permitting any browser-enabled PC or Mac to participate fully in all registry functions, including data-entry, viewing, editing, searching, reporting, validating, charting, and exporting data subsets to statistics packages. It includes "administrative" features and an active security system. The paper forms have been designed to reflect the "look and feel" of the Web pages. Automatic validation procedures are also included. CONCLUSIONS: Our Registry has been in operation for 3 years. It serves 10 PCs and contains more than 3,000 registered cases of CHD. It is the first CHD Registry to be fully functional on the Internet. It is also the first dedicated CHD registry, and the first to routinely report on the full spectrum of CHD diagnoses. The WWW offers several logistical advantages to disease registries, especially those that represent large regions. It also offers the possibility of sharing resources between registries, facilitating the aggregation and analysis of disease data on a world-wide scale. This is useful for rare diseases such as CHD (see http://rc.kfshrc.edu.sa/chdr/demo/).