INTRODUCTION Dreams of possibilities could easily be shattered due to the presence of illness.

As Eda Le Shan once said, A new baby is like the beginning of all things wonder, hope, a dream of possibilities. According to the World Health Organization (2012), 1 out of 33 infants (approximately 3.2 million) are born with birth defects every year, and an estimated 270 000 newborns die during their first 28 days of life because of this. This is one of the reasons why the Newborn Screening Program is being pushed through and has been mandated in the Republic Act no. 9288, which is the Newborn Screening Act of 2004. The Newborn Screening (NBS) includes screening tests and different treatments; thus, sparing the child from heritable conditions, serious health complications, or death if left undetected and untreated. It then paves way to help children achieve a better and more convenient way of living (R.A. no. 9288). It encompasses six parts: education, screening, follow-up, diagnosis, management, and evaluation. The state has set four objectives for the Newborn Screening Act, and these are as follows: (1) To ensure that every newborn has access to newborn screening for certain heritable conditions that can result in mental retardation; (2) To establish and integrate a sustainable newborn screening system within the public health delivery system; (3) To ensure that all health practitioners are aware of the advantages of newborn screening and of their respective responsibilities in offering newborns the opportunity to undergo newborn screening; and (4) To ensure that parents recognize their responsibility in promoting their childs right
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to health and full development, within the context of responsible parenthood, by protecting their child from preventable causes of disability and death through newborn screening (RA 9288, 2004). The United Nations praised the progress of the Philippines for the improvement of the coverage of Newborn Screening as evidenced by records taken from the Department of Health wherein 15.6% (234 000 out of 1.5 million babies) in 2007 increased to 35% in 2010 to 42% in 2011 (Legarda, 2009). While this is indeed a positive development, there is still a huge difference from what is expected of the approved law which indicates that all babies must be subjected to Newborn Screening, unless guardians refuse on the grounds of religious beliefs; therefore, the government needs all the help and support that it could get in order to save children from needless and preventable death (Legarda, 2012). In order to help achieve our health systems advocacy of promoting health, the researchers chose this study to help evaluate the Newborn Screening program and be able to gather reliable information that could reflect its effectiveness. It may also conclude whether the implementation needs improvement and reinforcement by the government and healthcare practitioners. It will also emphasize the importance of the program for the development and wellness of children in the future.

Statement of the Problem This study aims to answer the following questions: 1. What is the level of accessibility of patients to Newborn Screening System? 2. What are the existing manpower, budget, facilities, management, and policies for Newborn Screening? 3. What is the level of awareness of health practitioners on the advantages and their responsibilities in the implementation of Newborn Screening? 4. What are the actions being performed by parents in promoting their childs wellness in terms of subjecting children to Newborn Screening? 5. How many infants underwent Newborn Screening versus the number of infants born from 2007-2012? How many infants: a. Obtained positive results in Newborn Screening for: Congenital Adrenal Hyperplasia Congenital Hypothyroidism Galactosemia Glucose 6 Phosphate Dehydrogenase Deficiency Maple Syrup Urine Disease Phenylketonuria

b. Received proper management? c. Died? d. Obtained false negative results d.1. What happened to the child (with illness or dead)?
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d.2. Did the child receive proper treatment afterwards? 6. What are the difficulties encountered by the health practitioner and the parents on the conduct of Newborn Screening? 7. Are there differences on the process of Newborn Screening undertaken between: a. old and new facilities b. public and private c. primary and secondary hospitals

Objectives of the Study The study generally aims to evaluate the Newborn Screening Program specifically the processes undertaken in conducting the test in order to determine whether the implementation needs improvement and reinforcement by the government and healthcare practitioners as well as to let parents appreciate the importance of Newborn Screening to their children. Specifically, it aims to: 1. Determine the level of accessibility of patients to Newborn Screening System. 2. Describe the existing manpower, budget, facilities, management, and policies for Newborn Screening. 3. Determine the level of awareness of health practitioners on the advantages and their responsibilities in the implementation of Newborn Screening. 4. Determine the actions being performed by parents in promoting their childs wellness in terms of subjecting children to Newborn Screening.
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5. Determine the number of infants who underwent Newborn Screening versus the number of infants born from 2007-2012. How many infants: a. Obtained positive results in Newborn Screening for: Congenital Adrenal Hyperplasia Congenital Hypothyroidism Galactosemia Glucose 6 Phosphate Dehydrogenase Deficiency Maple Syrup Urine Disease Phenylketonuria

b. Received proper management? c. Died? d. Obtained false negative results d.1. What happened to the child (with illness or dead)? d.2. Did the child receive proper treatment afterwards? 6. Determine the difficulties encountered by the health practitioner and the parents on the conduct of Newborn Screening. 7. Determine if there are differences on the process of Newborn Screening undertaken between: a. old and new facilities b. public and private c. primary and secondary hospitals

Assumptions 1. All infants have easy access to Newborn Screening. 2. There is sufficient manpower, budget, and facilities as well as appropriate management and policies for the conduct of Newborn Screening. 3. The health practitioners are very much aware of the advantages and their responsibilities regarding Newborn Screening. 4. Parents aim to promote their childs health and wellbeing; thus, they subject their children to programs such as Newborn Screening 5. All infants except for those with religious issues were subjected to Newborn Screening as imposed by the law 6. Infants with positive results were given proper management in accordance with their disease. 7. The Newborn Screening Test detected congenital abnormalities which helped prevent complications and death of children.

Hypotheses Ho1: There are no difficulties encountered by health practitioners and parents on the conduct of newborn Screening Ho2: There are no differences on the process of Newborn Screening undertaken between old and new facilities; public and private facilities; and primary and secondary hospitals.

Significance of the Study The study will benefit the following: Mothers. Mothers will be able to grasp how important it is to subject their infants to Newborn Screening in order to detect congenital defects and be able to provide a better and healthier life for their children. This would help them take active participation in promoting the wellness of their child and in the implementation of the Newborn Screening Act within their family and community. Community. The results of the study are not limited to mothers only. Even people within the community could help in the implementation about Newborn Screening to help spread awareness and compliance; thus, helping prevent increase child mortality and child morbidity rate. It would also help develop their sense of communal work in achieving a better quality of life for children in the future. Healthcare Professionals. The study may help determine whether the implementation needs improvement and reinforcement by the government and healthcare professionals. Government. The study could help in the evaluation of the program and determine the efficacy of its implementation. It provides ways on how to modify the promotion of health among the people and help in establishing the law more firmly. It would help in monitoring the progress and achievement of the goal regarding its performance and effective policies.

Students. The study will help improve evaluation skills especially in gauging the effectiveness of a program. It would also enlighten them on their need to take part in disseminating information and promoting health and wellness. Researchers. Researchers also learn extensively during the whole research process. The knowledge is advantageous in the improvement of the efficacy and competency in performing and facilitating Newborn Screening as future health providers. Not only will their knowledge increase, but their moral, attitude, and characteristics are also being honed as they undergo this tedious but fun task of researching. Future Researchers. This study may be used by future researchers as inspiration and as a reference.

Scope and Limitation The respondents of the study would be Newborn Screening Centers in Cavite which were established before 2013 and are still active today. Selected mothers who delivered their child in those facilities would also be taken as respondents. The records that we will be getting are limited within the calendar years 2007-2012.

Definitions of Terms Congenital Adrenal Hyperplasia an endocrine disorder that causes severe salt loss, dehydration, and abnormally high levels of male sex hormones.

Congenital Hypothyroidism this is a lack of thyroid hormone, which your baby needs to grow. Effectiveness being able to produce expected and satisfying results or outcome Evaluation assessment of the objectives and satisfaction of a program False-negative results which have been released as negative but were actually positive Galactosemia a condition in which babies cannot process the sugar present in milk (galactose). This leads to increased galactose levels in the body, which leads to liver and brain damage. Glucose-6-Phosphate Dehydrogenase (G6PD) Deficiency condition where the body lacks the enzyme called G6PD. The deficiency may cause hemolytic anemia, when the body is exposed to oxidative substances found in certain drugs, food and chemicals NBS Newborn Screening Negative Screen means that the result of the test indicates extremely low risk of having any of the disorders being screened. Newborn a baby from birth to four weeks Newborn Screening Test means the process of collecting a few drops of blood from the newborn onto an appropriate collection card and performing biochemical testing for determining if the newborn has a heritable condition. New Facilities are facilities that were established five years ago or from 20082013 and are still active until today

Old Facilities facilities that were established more than five years ago, below 2007, and are still active until today. Phenylketonuria is a condition where the body does not properly use the enzyme phenylalanine, which may lead to brain damage. Positive Screen means that the baby is at increased risk of having one of the disorders being screened.

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Conceptual Framework

Accessibility Service Cost Availability Data Newborn Screening Test

Sustainability Manpower Budget Facilities Management

Health Practitioners Level of awareness: Advantages Responsibilities Professional development

Parents Childs health promotion through Newborn Screening Test

Interpretation: The diagram above shows the conceptual framework of our study. It is based on the four objectives determined by the law which includes: Accessibility, Sustainability, Health Practitioners, and Parents. Accessibility includes Service, Cost, Availability, as well as data about deliveries and Newborn Screening participants. Sustainability encompasses Manpower, Budget, Facilities,

Management, and Policies. The level of awareness on the advantages and responsibilities as well as professional development for health practitioners regarding Newborn Screening Test will be determined. And the responsibility of

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parents in promoting their childs wellness through Newborn Screening is the fourth component.

Theoretical Framework Process evaluation examines how a program is implemented, monitors the performance of a program, reviews the program to ensure that it is following required legal and ethical guidelines, and identifies defects in the procedural design or in the implementation of the program. This type of evaluation allows evaluators to gather information about what is actually occurring in the program. Evaluators typically provide this kind of feedback to program personnel because it can be helpful in making formative evaluation decisions. Formative evaluation is generally any evaluation that takes place before or during a projects implementation with the aim of improving the projects design and performance. Formative evaluation complements summative evaluation and is essential for trying to understand why a program works or doesnt, and what other factors either internal or external are at work during a projects life (evaluationtoolbox.net, 2010). Categories of formative evaluation When Why Proactive Pre-project To understand or clarify the need for the project Clarificative Project development To make clear the theory of change that the project is based on Logframe Interactive Project implementation To improve the projects design (continual improvement) as it is rolled out Semi-structured Monitoring Project implementation To ensure that the project activities are being delivered efficiently and effectively Budget tracking
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Examples Literature

Review Stakeholder Analysis Problem / Solution tree analysis

Matrix Program Logic

Interview Time tracking Focus Group / ORID Project Diary Questionnaire Dartboard Observation

In connection to our study, this type of evaluation process would help us assess Newborn Screening Test as an ongoing program in order to consider feedbacks and improvements.

CHAPTER II
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REVIEW OF RELATED LITERATURE

Republic Act 9288 The republic act 9288 or the Newborn screening act of 2004 that was approved last April 7, 2004 is a Philippine law which ensures a comprehensive policy and a national system for Newborn Screening Test. It is a policy of the state to protect and promote the right to health of the people, including the rights of children to survival and to a full and healthy development as normal individuals. It ensures that every baby born in the Philippines is offered the opportunity to undergo newborn screening and thus be spared from heritable conditions which could lead to mental retardation and death if undetected and untreated. It involves the collaboration among government and non-government agencies at the national and local levels, the private sector, families and communities, professional health organizations, academic institutions, and nongovernmental organizations. The objectives of the National Newborn Screening System are the following: (1) To ensure that every newborn has access to newborn screening for certain heritable conditions that can result in mental retardation; (2) To establish and integrate a sustainable newborn screening system within the public health delivery system; (3) To ensure that all health practitioners are aware of the advantages of newborn screening and of their respective responsibilities in offering newborns the opportunity to undergo newborn screening; and (4) To ensure that parents recognize their responsibility in
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promoting their childs right to health and full development, within the context of responsible parenthood, by protecting their child from preventable causes of disability and death through newborn screening (RA 9288, 2004).

Newborn Screening Test The newborn screening test is a universally accepted preventive program which is essential for the early identification of very rare disorders that threatens not only the life but also the development of the newborn. Babies born with congenital disorders may appear healthy at birth, and these disorders may go undetected until symptoms manifest later on at life. These illnesses could be serious congenital developmental, genetic, and metabolic disorders and once necessary actions are not undertaken early, the long-term health of the child may be affected. It could lead to mental retardation or worse, death if left untreated (Morrow C., et al, 2010). The procedure encompasses sample collection, laboratory testing, followup, diagnosis, treatment of identified disease, and evaluation of outcomes (Sielski M.D., 2012). With the help of early detection, diagnosis, and treatment or management of these conditions, there would be a significant decrease in the occurrence of these diseases and its associated disabilities and even death in affected patients. It gives newborns the chance to live a normal life by providing opportunities of early treatment before the disease becomes symptomatic (National Newborn Screening and Global Resource Center, 2013).
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In the Republic Act 9288 Article 2 Section 4, Newborn Screening is defined as a process wherein drops of blood from the newborn is obtained and collected in a card in order to execute biochemical testing to identify possible heritable conditions present in the child. Newborn Screening Test was first developed by Dr. Robert Guthrie. It was in 1962 when he first tried to come up with a simple and inexpensive yet effective screening test for hyperphenylalaninemia. This procedure tests dried blood on filter paper wherein phenylalanine inhibits bacterial growth. Even before this assay of Guthries, there was already an available ferric chloride test in detecting phenylalanine on wet diapers. Early identification of hyperphenylalaninemia on infants gave way to the early management of this condition wherein affected individuals were treated with a low-phenylalanine diet. Dr. Guthrie was able to discover that infants who were identified and treated early from the disorder had normal cognitive development compared to infants who were not able to receive early treatment since instead from being normal, they developed severe mental retardation (Bryant, et al, 2004). In the mid-1960s, the first universal screening program was implemented in Massachusetts soon after Dr. Guthries discovery. The program only screened one disorder, which was hyperphenylalaninemia. Soon thereafter, newborn hyperphenylalaninemia screening became available nationwide. From one disorder screened, there were now technological advancements leading to the increase in the number of disorders that were available for screening. There are now several states like North Dakota and Iowa that screens for 40 disorders; thus,
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offering the most comprehensive newborn screening programs. The disorders included in newborn screening may consist of IBEM, hemoglobinopathies, endocrine disorders, infectious disease, and other inherited disorders, such as cystic fibrosis. There is however an extensive variation in disorders screened from state to state (Bryant, et al, 2004).

Importance of Evaluation It is important to periodically assess and adapt your activities to ensure they are as effective as they can be. Evaluation can help you identify areas for improvement and ultimately help you realize your goals more efficiently. Additionally, when you share your results about what was more and less effective, you help advance environmental education (Thomson and Hoffman, 2003). Evaluations fall into one of two broad categories: formative and summative. Formative evaluations are conducted during program development and implementation and are useful if you want direction on how to best achieve your goals or improve your program. Summative evaluations should be completed once your programs are well established and will tell you to what extent the program is achieving its goals (Rossi et al., 2004). Update these documents on a regular basis, adding new strategies, changing unsuccessful strategies, revising relationships in the model, and adding unforeseen impacts of an activity (EMI, 2004). Program evaluation, conducted on a regular basis, can greatly improve the management and effectiveness of your organization and its programs. To do so
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requires understanding the differences between monitoring and evaluation, making evaluation an integral part of regular program planning and implementation, and collecting the different types of information needed by managers at different levels of the organization (Martinez, 2005). Public and private-sector agencies and organizations often include evaluation as an important component of their programmatic initiatives. But what is program evaluation and why is it important? Evaluation is the application of defensible criteria to determine the merit or worth of programs. Program evaluation involves the systematic collection of information about a program, or some aspect(s) of a program to reach conclusions about service delivery or effectiveness. The purposes of program evaluation may include 1) judgment of merit or worth; 2) oversight and compliance; 3) program and organizational improvement; or 4) knowledge development (Fitzpatrick, et al, 2003). Evaluation is an important component of NBS quality assurance. It is necessary to know if the component parts of the NBS system are functioning properly and if the goals of early detection and medical management are achieving the proper outcomes (medscape.com, 2007). The evaluation of a newborn for an abnormal screening result was highly stressful for parents. To help reduce parents' distress, improvements in communications and clinical services are needed. Recommendations of useful Internet sites and discussions of this information may benefit parents. Tailoring counseling to meet the needs of culturally and educationally diverse families is needed. Families and infants with equivocal results are a new group of patients
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who merit comprehensive clinical follow-up (American Academy of Pediatrics, 2011) Program evaluation is essential to a well-performing public health program, yet has often been misunderstood. As a valuable tool for communitybased organizations who want to strengthen the quality of existing programs, program evaluation can lead to improved outcomes for the populations served. The type of evaluation you undertake depends on what you want to learn and provide to communities. Start your program evaluation by identifying what you need to know to make necessary program decisions and how you can accurately collect and understand that information (Centers for Disease Control and Prevention, 2011). Effective program evaluation does more than collect, analyze and provide data. It makes it possible for program managers to gather and use information in order to learn continuously about the surveillance system and to improve its functions and outcomes. Routine evaluation offers learning opportunities, improved documentation, and shared understanding about what works within the system and why. Program evaluation is critical for program managers to ensure that resources dedicated to surveillance functions have been allocated in the most efficient and effective manner. (1) Obtaining feedback about the overall operation of the surveillance system and sharing these analyses with other system partners is the most effective means of ensuring targeted surveillance efforts as well as improving ongoing communication among the systems members (MMWR Morb Mortal Weekly Rep, 2001).
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Newborn Screening Process Newborn screening is important and it is done in 24 to 48 hours after a baby is born. It has 29 diseases are screened for at birth. At the same time as metabolic disorders are rare, the universal process for screening is not. In the course of educating pregnant mothers about newborn screening as a nurse we lessen their worries concerning initial positive test results and also make sure they act rapidly in re-testing their new baby (Lloyd-Puryear, et al., 2006). In follow-up testing the pediatrician notifies mothers if their baby needs follow-up testing, an immediate recommendation to a metabolic clinic, or an emergency room visit. This does not automatically mean that the newborn is at risk. Abnormal results are often due to special circumstances like premature birth, a blood sample taken incorrectly, or a transient finding. On the other hand, timely follow-up is important because abnormal results can indicate a metabolic disease or disorder (Johnson, et al, 2006). In false-positive result the majority of repeat tests will not indicate a metabolic disorder. The infants pediatrician will be informed by the newborn screening program of the follow-up test results. The pediatrician should then contact the mothers directly with the results. Mothers should be encouraged to contact their doctor if they are not informed of the results soon after the test is performed (National Newborn Screening and Genetics Resource Center, 2006). In positive result if follow-up testing indicates a true positive then the mothers will be referred to a metabolic specialist. The metabolic specialist will
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then do additional laboratory and/or genetic tests to verify the diagnosis. Through this, infants will be given treatment and mothers will gain knowledge about the care plan to avoid the consequences of an untreated metabolic disorder (Save Babies Organization, 2006). In the process of heel brick, one needs to talk to the maternal caregiver. Parents and guardian can request that leftover blood spots are returned after screening is finished. Stored sample can be used in special circumstances only. Blood sample collected and sent to the laboratory for testing. Sample should be taken as soon as possible after is 48 hours old and before 72 hours. Sample should be dried and sent to the laboratory on the same day as the sample is taken. If the result is negative nothing more is necessary. If the result is positive, the baby will need another sample on a blood spot card, addition testing or both. They may also be referred to pediatrician/metabolic specialist. The additional tests the baby will need depend on the condition suspected after the screening. If the result is negative, when the screening is finished leftover blood spots are either stored or sent back as arranged. When the result is positive a condition has been identified. The pediatrician and/or metabolic specialist and/or their teams will give the information about the condition identified (Save Babies Organization, 2006). Results of the screening are sent to the hospital or clinic where the sample was collected. Ask your doctor any questions you may have concerning the results or the newborn screening process. If your childs initial screening was unclear or abnormal the newborn screening may need to be repeated. If necessary, it is important to make sure that this test is repeated as soon as possible. Your
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babys doctor will talk with you about what steps need to be taken (Genetics/Newborn Screening Program, 2006).

Disease Detected by Newborn Screening in the Philippines Congenital adrenal hyperplasia this is endocrine disorder that causes severe salt loss, dehydration of high levels of male sex hormones in both boys and girls. If not treated, babies may die within 7-14 days (Harrow, CM, 2011). Phenylketonuria it is rare, in recognizing phenylketonuria right away can help prevent serious health problems. Babies with phenylketonuria (PKU) need to follow a diet that limits phenylalanine, which is found mostly in high-protein foods (Mayo clinic staff, 2009). Glucose 6- phospate dehydrogenase deficiency this is the enzyme deficiency in humans. According to (Baby Center, 2011) approximate 400 million people around the world are affected. In the Philippines, around 1 in 50 children are G6PD deficient. The G6PD deficiency is more common in boys than in girls. There is no known cure for G6PD deficiency. It is a lifelong condition that cannot be outgrown. However, a child with G6PD deficiency can live an active, healthy and normal life as long as he is able to avoid the substances that can trigger G6PD deficiency symptoms (Baby Center, 2011). Congenital hypothyroidism this is the lack of thyroid hormones necessary for the mental and in physical development also of a child. If it is not treated at an early stage of a child or within two weeks, the baby may undergo from growth

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and mental retardation. And the method that used in stimulating hormones is called immunoflourescent (Harrow 2011). Galactosemia it is one of the disorders that which is a child are not capable to process galactose. Galactose is the sugar that present in milk. Too much galactose in the body can cause problems include liver and brain damage and cataract if it is not treated (Harrow 2011). To determine the incidence of galactosemia in the Philippines and to find out whether newborn screening for galactosemia is cost-beneficial from a societal perspective, cost-benefit analysis was performed. Newborn screening for galactosemia was finished after the 24th hour of life using the Beutler test on the other hand it is ideally done on the 48-72 hours after birth to discover all the metabolic conditions/disorders (Padilla et.al, 2003).

Management of the Diseases Detected Congenital Adrenal Hyperplasia For medical management, the child will be prescribed with replacement hormones to boost the levels of deficient hormones and reestablish them to normal levels. Example is hydrocortisone or dexamethasone to replace cortisol and fludrocortisone to substitute aldosterone. For girls, a careful balance of the correct amount of cortisone medications is needed to suppress androgens; thus, leading to normal height and reduction of masculine characteristics. These longterm use of steroids may cause side effects so the child is monitored for loss of bone mass and impaired growth. Regular blood tests are also ordered to see if the
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doses need to be adjusted. As for the surgical aspect, female infants with indistinct presentation of external genitalia are recommended for reconstructive surgery to correct the appearance and function of the genitals. It is typically performed between two and six months of age. The procedure may entail reduction of the size of the clitoris and reconstruction of the vaginal opening (Blah blah, daksol). Congenital Hypothyroidism Congenital Hypothyroidism (CH) could result to mental retardation unless treatment is started within two weeks after the child is delivered, since cognitive outcomes depend on the timing and adequacy treatment rendered. It begins with thyroid therapy wherein attainment of normal level of thyroid hormone as soon as possible is targeted. While there is ongoing therapy, the child must be subjected to follow-up check-ups for laboratory and clinical testing to ensure optimal dosing and compliance to therapy (Smith, 2007). Galactosemia Galactosemia is an inherited condition wherein the body is unable to metabolize galactose. Galactose is composed of half lactose milk sugar, and half glucose. Since the body cannot break down galactose, these substances accumulate in the infants body whenever they are given milk; thus, damaging the liver, kidney, brain, and eyes. People with this disorder cannot tolerate any form of milk, either human or animal. They are managed through immediate dietary intervention by avoiding all milk, milk-containing products, and other foods that contain galactose for life. Infants can de fed with soy formula, meat-based
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formula or nutramigen, and other lactose-free formula. Calcium supplements are also recommended. If infants ingest lactose-containing food, symptoms may appear in the first few days of life. So it is important that they get an early diagnosis in order to strictly avoid milk products and be able to live a moderately normal life. But no matter how much a person avoids milk, mild intellectual impairment may still develop (Berry, et al, 2006). Glucose-6-Phosphate Dehydrogenase Deficiency (G6PD deficiency) G6PD deficiency is a condition where the body lacks the enzyme called G6PD. The deficiency may cause hemolytic anemia, when the body is exposed to oxidative substances found in certain drugs, food and chemicals. Mainly, the treatment for this disorder is to avoid oxidative stressors (Frank, 2005). Maple Syrup Urine Disease Maple Syrup Urine Disease is a metabolism disorder wherein the body cannot break down parts of protein, specifically leucine, isoleucine, and valine, resulting to accumulation of these chemicals in the blood; thus, urine that smells like maple syrup. Its most severe form could damage the brain if a person is subjected to physical stressors such as infection, fever, or not eating for a long time, while its mildest forms could already cause intellectual disability and high levels of leucine through repeated exposure to physical stress. The treatment involves eating a protein-free diet. Fluids, sugars, and fats are given through an intravenous route. There is also a special diet free of branched-chain amino acids which is started when amino acid levels are normal. The health care provider would then monitor the levels closely and will make adjustments based on the
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amino acid levels. Long term treatment includes a special diet as well wherein the baby is given artificial formula with low levels of leucine, isoleucine, and valine. Following this diet prevents damage to the nervous system; therefore, frequent blood tests and close supervision by a dietician and physician are necessary, alongside with the parents cooperation (Wendel and Ogier de Baulny, 2006). Phenylketonuria Phenylketonuria is a disorder wherein the body lacks an enzyme Phenylalanine hydroxylase (PAH) to metabolize amino acid. It results in increased levels of phenylalanine (Phe) in the body resulting to mental retardation, microcephaly, seizures, eczema, behavior abnormalities, and neurotoxicity. Treatment includes management of phenylalanine levels to avoid brain damage while still being able to maintain appropriate nutrient intake. The diet contains restriction (not total elimination) of Phenylalanine and supplementation of other essential amino acids, vitamins, minerals, and energy intake in order to regulate and keep Phenylalanine levels at the targeted range as well as to provide the body with necessary nutrients and to maintain normal growth and development. Aspartame, which is found in many artificially sweetened foods and soft drinks and some vitamins and medicines, must be eliminated. Breastfeeding is usually possible and should not be stopped unless instructed. All high-protein foods such as meat, dairy, nuts, and legumes must be eliminated, while starches like bread, potatoes, corn, and beans are restricted.

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Mostly, what is allowed for people with Phe are low-protein foods like pastas and breads especially made with low-protein (Merck, 2009).

Roles of Facilities and Agencies in Newborn Screening The success of the Newborn Screening Program depends upon the coordinated efforts of many health care professionals, Medical Home and/or other Healthcare Professionals are generally responsible for ordering the screening tests for newborn infants in their care, informing parents about the screening tests, and collection and handling of newborn screening specimens. Practitioners, and/or their contracted laboratories, may collect and send specimens for testing. Practitioners, hospitals and laboratories work together to coordinate timely collection and rapid delivery of acceptable newborn screening specimens (Sebelius, 2012). Filipinos may still be lacking the information they need to know on the benefits of newborn screening, so the primary care physicians, including other health and education professionals and organizations, third party players and managed care organizations, and related commercial industries, are called upon to boost the information campaign on newborn screening so as to realize a wider coverage of the mandatory testing on infants (Ubac, 2009).

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Synthesis Newborn Screening Program is definitely an indispensable procedure which could help save and improve the quality of life of newborns. It has been passed as a law to comply upon in helping reduce morbidity and mortality of children; thus, enforcing and promoting a healthier and better way of living. The management done per disease detected ensures that every child is given a chance to live normally and better than if their diseases were not detected at birth. State newborn screening systems have a responsibility to review the appropriateness of existing tests, tests for additional conditions, and new screening technology and modalities. Public health agencies, working under legislative authority, have the ongoing responsibility to ensure quality and evaluate program effort. Public health may require taking a greater role in implementation of the program. Public health agencies might play a role in financing for these rare but potentially costly activities. Collaboration and leadership across the participating clinical and public health entities will be needed to effectively implement the said program. Virtually all parents support newborn screening for conditions requiring early treatment. The support for screening for untreatable conditions may result in part from idealistic expectations of early diagnosis to improve outcomes, even in the absence of a treatment.

CHAPTER III
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METHODOLOGY

Research Design The design of our research is non-experimental evaluative research and the instrument to be used for data gathering would be questionnaires. Salustiano (2009) stated that Evaluative research is utilized for testing the quality, effectiveness, and efficiency of products, treatments, procedures, or methods. Our study would specifically evaluate the procedure or the processes undertaken on the conduction of Newborn Screening test.

Sampling Procedure We will be using systematic sampling in selecting the facilities that we are going to choose as respondents. The facility which appears every 5th in the alphabetical list of active facilities will be picked out, while for the parents who will be chosen, we will be using selective sampling as well wherein the patient on every 5th entry of the record will be the respondent.

Time and Place of the Study The gathering of data would be conducted from July to September 2013. The place would be within Cavite area and the facilities which will be chosen from the sampling method.

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Research Instrument The instrument that will be used in this study is a close-ended type of questionnaire. The first part of the questionnaire consists of questions for the parents. There are 19 questions regarding the Newborn Screening Systems accessibility, sustainability, awareness, and responsibility. We will be utilizing the Likerts scale to determine the level of their answer where: 5 highly agree 4 agree 3 neutral 2 disagree 1 highly disagree The second part consists of questions for the healthcare provider. They will be given a questionnaire regarding the Newborn Screenings sustainability based on their perception. There would also be an exam to gauge the level of awareness which has 20 items and will be scored accordingly: 0-3 very low 4-8 low 9-12 average 13-17 high 18-20 very high

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The third part consists of a checklist to determine what problems were encountered by both the healthcare provider and the parents in the conduct of Newborn Screening test.

Data Gathering Procedure The questionnaires would be given to the facilities and to their respective clients who will be chosen from a list. We would also be profiling records to obtain data regarding Newborn Screening. The study will be conducted from July to September 2013; thus, giving the researchers two months to conduct the survey. Analysis and evaluation of the answers would be performed once data is complete.

Testing for the Validity We will be checking the standard procedure on Newborn Screening Test of each facility and compare it with the standard procedure set by the Newborn Reference Screening Center of Cavite. We will also be gathering information from mothers to confirm whether their answers are congruent with the answers of the healthcare providers. Given the chance, we would also be directly observing how Newborn Screening Test is actually done in the facilities.

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