الفهرس 
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Abstract
The Egyptian Ministry of Health and Population (MOHP) endorsed the screening program for congenital hypothyroidism (CH) using TSH assay method. The aim of this study was to evaluate the impact of congenital hypothyroidism management program in Ismailia Governorate in terms of: evaluation of growth and development of treated cases, compliance of the healthcare providers’ (physician and nurse) to the current program, compliance of the target families’ to the current protocol of management program, and the coverage rate starting from 1-1-2007 for 2 years.
The study was carried out through descriptive, cross-sectional and follow-up approaches in pediatric clinic in the Insurance Students’ Hospital in Ismailia Governorate which in affiliated for congenital hypothyroidism management of positive cases detected by screening test from 1-1-2009 for one year (15 cases).
The following methods and tools were used for collection of data:
1- A structured interview questionnaire: for mothers of all studied subjects coming for regular follow-up and receiving treatment for CH in Insurance Students’ Hospital. It was designed to collect data about family history, symptoms and signs of CH before and after 6 months of treatment.
2- Physical examination: for all studied subjects coming for regular follow-up and receiving treatment for CH in Insurance Students’ Hospital. They were subjected to complete physical examination including measuring weight, recumbent length and head circumference. They were re-examined after 6 months of treatment.
3- A structured interview questionnaire: for mothers of all studied subjects. It was designed to collect data about health education given to them about the program during pregnancy and after delivery, their knowledge about newborn screening, their satisfaction and compliance to therapy, scheduled follow-up visits, and investigation.
4- Abstraction checklist form: to assess the coverage rate of the program from 1-1-2007 to 31-12-2008, two records were reviewed:
• Records of live births starting from1-1-2007 to 31-12- 2009 were collected from the health directorate in Ismailia Governorate.
• The records of positive cases included true positive and number of cases came for follow up visits during the period from1-1-2007 to 31-12-2009 were collected from the Insurance Students’ Hospital in Ismailia Governorate.
5- Open interview questionnaire: for health care providers (physician and nurse) at the clinic to investigate in depth their knowledge and compliance towards the management program.
The results of this study can be summarized as follows:
1- Parents of cases were first and second cousin in 26.7%, 13.3% respectively. A positive family history of thyroid disease was reported among 20% of cases.
2- Screening was done in the first week in most of studied subjects (86.7%). The age at serum sampling ranged between 7 and14 days in most of cases (80%). The age at confirmation was between 7 and 14 days in 53.3% of cases. Also the age of start of therapy was between 14-21 days in 60% of cases.
3- The growth assessment (Z score) of studied subjects showed that 20% and 26.7% of cases showed improvement for weight/age and height/age respectively.
4- Neuro-development assessment by Age and Stage Questionnaire-3 revealed that 40% of cases showed improvement for personal-social area, and 26.7% for problem solving area, while the minority of cases showed improvement in communication and gross and fine motor areas.
5- Only 33.3 % of mothers reported that being informed about the test during pregnancy. 40% of mothers were informed by posters in health unit while 20% were informed by physician, neighbors and relatives. 66.7% of mothers were informed about the test after delivery. The source of information about the test was mainly from the health office (20%) when they went for registration of their births.
6- As regards the knowledge of mothers about the benefits of early treatment, 40%, 26.7%, 13.3%, 20% of mothers mentioned that early cure without handicapping, no complication occurrence from disease, prevention from mental retardation, and no benefits of treatment respectively.
7- Only 66.7% of mothers were satisfied with the waiting time, with nurse and physician attitude, and discipline, while 60%, 53.4%, 46.7% of mothers were satisfied with time of visit, place of hospital, and place of waiting respectively.
8- Mothers compliance to therapy, to scheduled visits and to investigations was (53.3%), (26.7%) and (86.7%) respectively.
9- The coverage of the program was 92.4%, 91.7% and 90.9% in years 2007, 2008 and 2009 respectively.
10- The positive predictive value of the screening test was 24.3%, 30.7% and 42 % in years 2007, 2008 and 2009 respectively.
11- For 60% of cases, their families were informed about the positive result by telephone call at home. The health visitor informed the families, through home visits, about the positive results for 26.7% of cases. For 13.3% of cases, their families enquired about the result in primary health care units.
12- The physician was aware that the neonatal screening program for CH is currently applied in Ismailia governorate. However, the exact starting date was not clear. He was unable to give an exact figure about incidence of CH while he was aware about the timing of screening (third to seventh day after birth) and the screening test is followed by confirmatory test. The physician knew the treatment of hypothyroidism that should start as early as possible before age 3 weeks, however could not give the exact dose.
13- The nurse did not get any training in the field of newborn screening program for congenital hypothyroidism. The nurse was aware that the treatment should start early in the first 15 days of life. Moreover, the nurse agreed that if the child receives that treatment at later age, mental retardation may result. She knows that the symptoms and signs may not be clear clinically to the pediatrician that is why screening for all children is done. She was aware about the timing of screening. The nurse was not aware about the importance of health education about the disease of CH; the nurse considered that the health education is the role of physician. She also mentioned that most of the families not compliant to the scheduled visits because of the far distance between home and hospital.
The following are the main recommendation:
For program implementation:
1- Extend the period of sampling and not to refuse any baby coming for screening.
2- Problem –oriented and simplified neuropsychological follow-up of treated children with CH should be done at regular intervals.
3- Improving monitoring and supervision of the program through:
• Calculation of the coverage rate at each health zone and monitoring the diagnosis, treatment and follow-up of positive cases at each health care facility.
• Regular collection and checking of this information to be presented as an annual report about different program components.
• Regular supervision of health care provider’s performance mainly about the follow-up of cases.
For health care providers:
1- Efforts to build enhanced direct communication systems, linking newborn screening programs to community based primary care offices, should continue. Such systems would help to enhance timely follow-up for screen-positive infants and facilitate information sharing among those involved in caring for children.
2- The need for more training courses about newborn screening program to include all health care providers working in health care facilities which providing the program.
For families of screened newborns:
1- Broad casting of health educational materials about the screening test through mass media (Radio, T.V) is important to raise the awareness of the public about the program.
2- It is more beneficial for health professionals to endeavor to provide information about newborn screening during prenatal period as women’s ability to adequately absorb the information is much better during this period.
3- To emphasize the importance of health education of mothers about the disease of congenital hypothyroidism (CH) during screening.
Further researches:
1- Similar studies describing and evaluating the program should be repeated at suitable intervals in each governorate.
2- Large nation-wide study should be undertaken to evaluate the program and its impact on child morbidity.
3- Further studies about the psychological reaction of Egyptian families for a positive screening test are needed.