Evaluation of Phenylketonuria and Congenital Hypothyroidism Newborn Screening Program in Gaza Governorates

Niveen Talal Jadallah
نفين طلال عبد الحميد جادالله
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Al-Quds University
Newborn screening is a public health program that aims at the early identification of conditions in which early and timely interventions can lead to the elimination or reduction of associated mortality, morbidity, and disabilities. The evaluation of Phenylketonuria and Congenital Hypothyroidism newborn screening program in Gaza governorates which could and will aid in the improvement of health services and support controlling and preventing their deterioration. The study design was a cross sectional, considering three different component of the newborn screening program; parents, Guthnie screening card, and health care providers. A geographically, proportional stratified sample was used to select parents (400) and a simple random sample technique was used to select cards (300) while the study involved all health care providers(107) who provided vaccination services and newborn screening test. The findings of this study showed that the cards filled with required data represented 34.7 % cards while 65.3 % had missed data in an area or another. Among cards that were completely documented 81% were from UNRWA clinic while 19% were from governmental clinics. There was a statistical significant relationship between sample collection date and governorate. The percentage was 7.1 in North, 57.1% in Gaza 62.7% in middle zone, 26.7 % in Khanyouis and 57.1% in Rafah. The suitability of blood sample for test was assessed and the results showed that the UNRWA samples were more suitable than governmental clinics; they were 87.4%, 59.4% respectively. There was apparent knowledge deficit regarding the newborn screening tests among both the health care providers as well as the parents. Only 24% of parents knew what was done for their newborns before drawing the specimen. Health care providers who revealed to be familiar with congenital hypothyroidism test were limited (46.4%) in congruously knowledge about PKU was high (92%). The study reflected that 38% of health care providers give health education before drawing the sample and 47% claimed to give health education during antenatal care. On the other hand, a clear gap was observed between health care provider's claims and the parent's opinion of the information they have received. The parents who showed to receive information during pregnancy were 1% for PKU and 20.5% for hypothyroidism. Parents received information before tests were 20.5% PKU and only 3% congenital hypothyroidism. This might reflect a communication gap between health care providers and clients that require further research. Study revealed poor follow up of results and registration in such a program. The researcher observation during the visits to the health centers revealed lack of standardizations as procedures are not done in standardized way a cross department and centers. Health care providers directly involved in this program must be continuously trained educated and updated about issues related to the newborn screening programs and quality control and assurance in sample withdrawal and data recording. Health care providers must pay more efforts in follow up of the screening tests results, their reporting to parents, and proper registration in the child medical files. Parents, especially mothers must be well instructed during pregnancy about the advantages of conducting the newborn screening programs as soon as possible of the child birth.