Examination of the Communication Practices Between State Newborn Screening Programs and the Medical Home

Kim, Sunnah; Lloyd-Puryear, Michele A.; Tonniges, Thomas F.

doi:10.1542/peds.111.2.e120

Cited by 60 publications

(46 citation statements)

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“…In addition, few data exist on the knowledge and needs of parents and health care professionals for education in this area. 1,2 The American Academy of Pediatrics (AAP) Newborn Screening Task Force recommended in 1999 that each state design and implement parent education efforts regarding newborn screening. 2 Although written educational materials regarding newborn screening now exist in 49 of the 51 US states/territories, their effectiveness may be hampered by dissemination problems and lack of reading ease.…”

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confidence: 99%

Recommendations for Effective Newborn Screening Communication: Results of Focus Groups With Parents, Providers, and Experts

et al. 2006

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OBJECTIVES. The aims of this study were to determine parent and provider knowledge and awareness of newborn screening; to gather opinions from parents, providers, and newborn screening professionals about the content and timing of newborn screening education; and to use consensus data to formulate recommendations and to develop educational materials for parents and providers.METHODS. We conducted 22 focus groups and 3 individual interviews between October 2003 and May 2004, with English-and Spanish-speaking parents of infants Ͻ1 year of age who had experience with initial testing, retesting, or false-positive screenings; health professionals who provide prenatal care or health care for newborns; and state newborn screening program health professionals.RESULTS. Parents and providers had limited knowledge and awareness about newborn screening practices. Parents wanted brief to-the-point information on newborn screening and its benefits, including the possible need for retesting and the importance of returning promptly for retesting if initial results are abnormal. Parents wanted the information orally from the primary care provider. Parents, providers, and newborn screening professionals all thought that an accompanying concise, easy-to-read brochure with contact information would be helpful. All focus group participants thought that parents should receive this information before the birth of the infant, preferably in the third trimester of pregnancy. Providers wanted a brief checklist of information and resources to prepare them to educate parents effectively.CONCLUSIONS. We recommend prenatal and primary care providers be more involved in educating parents about newborn screening. Professional societies and state health officials should work together to encourage parent and provider education. User-friendly patient and provider education materials, such as those we developed, could form the basis for this educational approach. the United States operates a newborn screening program to test neonates for selected genetic and other disorders. State programs differ not only in the disorders for which testing is performed but also in the information given to parents and the process of reporting results, contacting parents, and referring them for care when an infant's test results are abnormal. [1][2][3] Newborn screening communication practices were recently addressed in a study by Kim et al, 1 who surveyed the program staff of all state newborn screening programs. Those investigators found that often the responsibility for informing parents about the testing is not clearly defined. Less than 50% of the states responded that primary care providers had some responsibility for informing parents about newborn screening, and only 25% indicated that they encouraged or required prenatal providers to educate parents. Most commonly, states reported that parents are informed about newborn screening procedures immediately before testing. Kim et al 1 concluded, "States should work with families, primary care physicians, ...

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Recommendations for Effective Newborn Screening Communication: Results of Focus Groups With Parents, Providers, and Experts

et al. 2006

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“…Neonatal screening is a system of five stages that is habitually organized and carried out by the public health system, which has the resources and authority necessary to carry out universal screening, and in which pediatricians play an important role. 2,13,14,17,[19][20][21] The first step is to carry out the screening tests themselves. The objective is to achieve universal screening, i.e., all newborn infants should be screened.…”

Section: The Concept Of Neonatal Screeningmentioning

confidence: 99%

“…13,14,22,23 The Newborn Screening Expert Group found a clear disparity between the information available and the information needed by the primary care physician (pediatricians and family doctors) to ensure an immediate response to positive screening tests and so recommended that professional training should be the responsibility of the screening system. They also developed a list of actions (ACT sheets) to be taken in the event of a positive diagnosis for each of the diseases proposed for testing.…”

Section: Physicians' Knowledge About Expanded Screening By Tandem Masmentioning

confidence: 99%

“…2,[12][13][14][15] In this article we will review the literature and provide an update on the aspects of neonatal screening that are most important to pediatricians, with the intention to form a critical opinion and to increase their participation in the Ministry of Health's National Neonatal Screening Program (NNSP) and intervention in the private screening tests that exist in Brazil.…”

Section: Introductionmentioning

confidence: 99%

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Triagem neonatal: o que os pediatras deveriam saber

Leão¹,

Aguiar²

2008

J. Pediatr. (Rio J.)

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Objective: To review the literature on the current situation of neonatal screening worldwide and in Brazil. To define the role of pediatricians in neonatal screening programs. Summary of the findings:Published data demonstrate a great diversity in the number of diseases included in the neonatal screening programs of different countries. In Brazil, the National Neonatal Screening Program was set up in 2001, to screen for phenylketonuria, congenital hypothyroidism, sickle-cell anemia and cystic fibrosis. Screening for a wider range of conditions using mass spectrometry is currently the subject of disagreement and discussion of financial and ethical issues. Conclusions:Neonatal screening is one of the most important advances for the prevention of pediatric diseases.Nevertheless, implementation is complex, multidisciplinary and dependent on public health policies and, to date, there is no consensus on which diseases should be included. A large number of scientific and ethical questions need to be discussed in order to better define the screening panels to be implemented. Pediatricians have important roles to play in all stages of neonatal screening programs.J Pediatr (Rio J). 2008;84(4 Suppl):S80-90:

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“…Because many parents are informed about newborn screening just before specimen collection, it is essential that all clinicians involved in the health supervision of newborns and expectant mothers be well informed about genetics and specifically about newborn screening. A survey by Kim et al 5 indicated that the techniques used most commonly to inform and to educate parents were informational brochures and a conversation with the parents (generally the mother of the newborn) immediately before or after the birth of the infant. The survey found, however, that states seldom defined who would have the role of and responsibility for informing and educating parents about newborn screening.…”

Section: Promoting Education and Training For Families And Health Carmentioning

confidence: 99%

American Academy of Pediatrics Newborn Screening Task Force Recommendations: How Far Have We Come?

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The partnership of the Health Resources and Services Administration (HRSA)/ Maternal and Child Health Bureau (MCHB) and the American Academy of Pediatrics (AAP) for improving health care for all children has long been recognized. In 1998, the establishment of the Newborn Screening Task Force marked a major initiative in addressing the needs of the newborn screening system. At the request of HRSA/MCHB, the AAP convened the task force to ensure that pediatric clinicians assumed a leadership role in examining the totality of the newborn screening system, including the necessary linkage to medical homes. The task force's report, published in 2000, outlined major recommendations for federal, state, and other national partners in addressing the identified barriers and needed enhancements of the care delivery system. Today, manifestations of the task force's recommendations are evident, many of which occurred under the leadership of HRSA/MCHB and the AAP. These activities are detailed in this article, with a discussion of future progression toward a quality, consistent, coordinated system of care for children identified with positive newborn screening results, their families, and the child health professionals who care for them.www.pediatrics.org/cgi

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Examination of the Communication Practices Between State Newborn Screening Programs and the Medical Home

Cited by 60 publications

References 6 publications

Recommendations for Effective Newborn Screening Communication: Results of Focus Groups With Parents, Providers, and Experts

Recommendations for Effective Newborn Screening Communication: Results of Focus Groups With Parents, Providers, and Experts

Triagem neonatal: o que os pediatras deveriam saber

American Academy of Pediatrics Newborn Screening Task Force Recommendations: How Far Have We Come?

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