{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,20]],"date-time":"2026-03-20T16:24:39Z","timestamp":1774023879095,"version":"3.50.1"},"reference-count":16,"publisher":"American Academy of Pediatrics (AAP)","issue":"5","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2006,11,1]]},"abstract":"<jats:p>BACKGROUND. Although primary care physicians are responsible for providing follow-up care after a positive newborn screen, little is known about their willingness or ability to do so.<\/jats:p><jats:p>METHODS. A national mail survey of a random sample of 350 general pediatricians and 350 family physicians was conducted from April to June 2006.<\/jats:p><jats:p>RESULTS. The response rate was 63% among pediatricians and 50% among family physicians. Most pediatricians (89.7%) and nearly one half of family physicians (44.1%) had had a patient with a positive newborn screen within the past 5 years. Most respondents thought that primary care physicians should be responsible for informing families about a positive newborn screen (73.2%), arranging confirmatory testing (66.0%), and coordinating subspecialty referral (85.3%). However, more than one half (56.2%) would prefer newborn screening programs to provide the initial evaluation of positive newborn screening results. Some respondents (but fewer pediatricians than family physicians) reported that they were not competent to discuss conditions included in newborn screening panels (eg, 22.6% of pediatricians and 53.2% of family physicians for phenylketonuria and 8.8% of pediatricians and 40.4% of family physicians for congenital hypothyroidism). More than one half (58.3%) thought that families with a child diagnosed as having congenital hypothyroidism should receive formal genetic counseling. Respondents were less likely to think that families with a child with sickle cell trait, compared with families with a child who is a cystic fibrosis carrier, should receive formal genetic counseling (69.3% vs 84.1%).<\/jats:p><jats:p>CONCLUSIONS. Many primary care physicians are not prepared to manage the follow-up care of children with a positive newborn screen, including initial counseling, diagnosis, and subspecialty referral. New strategies are needed to ensure appropriate and equitable health care delivery.<\/jats:p>","DOI":"10.1542\/peds.2006-1639","type":"journal-article","created":{"date-parts":[[2006,11,2]],"date-time":"2006-11-02T18:04:44Z","timestamp":1162490684000},"page":"1836-1841","source":"Crossref","is-referenced-by-count":64,"title":["Primary Care Physicians' Attitudes Regarding Follow-up Care for Children With Positive Newborn Screening Results"],"prefix":"10.1542","volume":"118","author":[{"given":"Alex R.","family":"Kemper","sequence":"first","affiliation":[{"name":"Program on Pediatric Health Services Research, Department of Pediatrics, Duke University, Durham, North Carolina"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rebecca L.","family":"Uren","sequence":"additional","affiliation":[{"name":"Child Health Evaluation and Research Unit, Division of General Pediatrics, University of Michigan, Ann Arbor, Michigan"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kathryn L.","family":"Moseley","sequence":"additional","affiliation":[{"name":"Child Health Evaluation and Research Unit, Division of General Pediatrics, University of Michigan, Ann Arbor, Michigan"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sarah J.","family":"Clark","sequence":"additional","affiliation":[{"name":"Child Health Evaluation and Research Unit, Division of General Pediatrics, University of Michigan, Ann Arbor, Michigan"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"417","published-online":{"date-parts":[[2006,11,1]]},"reference":[{"key":"2021120823193283000_R1","doi-asserted-by":"crossref","unstructured":"American Academy of Pediatrics, Newborn Screening Task Force. Serving the family from birth to the medical home: newborn screening: a blueprint for the future: a call for a national agenda on state newborn screening programs. Pediatrics.\u20082000;106:389\u2013422","DOI":"10.1542\/peds.106.S2.389"},{"key":"2021120823193283000_R2","doi-asserted-by":"crossref","unstructured":"Bordley WC, Travers D, Scanlon P, Frush K, Hohenhaus S. Office preparedness for pediatric emergencies: a randomized, controlled trial of an office-based training program. Pediatrics.\u20082003;112:291\u2013295","DOI":"10.1542\/peds.112.2.291"},{"key":"2021120823193283000_R3","unstructured":"National Newborn Screening and Genetics Resource Center. National newborn screening status report. Available at: http:\/\/genes-r-us.uthscsa.edu\/nbsdisorders.htm. Accessed May 17, 2006"},{"key":"2021120823193283000_R4","doi-asserted-by":"crossref","unstructured":"Gruskin A, Williams RG, McCabe ERB, et al. Final report of the FOPE II Pediatric Subspecialists of the Future Workgroup. Pediatrics.\u20082000;106:1224\u20131244","DOI":"10.1542\/peds.106.SE1.1224"},{"key":"2021120823193283000_R5","doi-asserted-by":"crossref","unstructured":"American College of Medical Genetics, Newborn Screening Expert Group. Newborn screening: toward a uniform screening panel and system: executive summary. Pediatrics.\u20082006;117:S296\u2013S307","DOI":"10.1542\/peds.2005-2633I"},{"key":"2021120823193283000_R6","unstructured":"American College of Medical Genetics. Newborn screening ACT sheets and confirmatory algorithms. Available at: www.acmg.net\/resources\/policies\/ACT\/condition-analyte-links.htm. Accessed May 17, 2006"},{"key":"2021120823193283000_R7","doi-asserted-by":"crossref","unstructured":"Acharya K, Ackerman PD, Ross LF. Pediatricians' attitudes toward expanding newborn screening. Pediatrics.\u20082005;116(4). Available at: www.pediatrics.org\/cgi\/content\/full\/116\/4\/e476","DOI":"10.1542\/peds.2005-0453"},{"key":"2021120823193283000_R8","doi-asserted-by":"crossref","unstructured":"Koopmans J, Ross LF. Does familiarity breed acceptance? The influence of policy on physicians' attitudes toward newborn screening programs. Pediatrics.\u20082006;117:1477\u20131485","DOI":"10.1542\/peds.2005-1990"},{"key":"2021120823193283000_R9","doi-asserted-by":"crossref","unstructured":"Desposito F, Lloyd-Puryear MA, Tonniges TF, Rhein F, Mann M. Survey of pediatrician practices in retrieving statewide authorized newborn screening results. Pediatrics.\u20082001;108(2). Available at: www.pediatrics.org\/cgi\/content\/full\/108\/2\/e22","DOI":"10.1542\/peds.108.2.e22"},{"key":"2021120823193283000_R10","doi-asserted-by":"crossref","unstructured":"Freed GL, Nahra TA, Wheeler JRC. Which physicians are providing health care to America's children? Trends and changes during the past 20 years. Arch Pediatr Adolesc Med.\u20082004;158:22\u201326","DOI":"10.1001\/archpedi.158.1.22"},{"key":"2021120823193283000_R11","doi-asserted-by":"crossref","unstructured":"Randolph GD, Pathman DE. Trends in the rural-urban distribution of general pediatricians. Pediatrics.\u20082001;107(2). Available at: www.pediatrics.org\/cgi\/content\/full\/107\/2\/e18","DOI":"10.1542\/peds.107.2.e18"},{"key":"2021120823193283000_R12","unstructured":"Kemper AR, Foster CM. Congenital hypothyroidism: a guide for the general pediatrician. Contemp Pediatr.\u20082003;20:32\u201348"},{"key":"2021120823193283000_R13","unstructured":"Council of American Survey Research Organizations. On the definition of response rates: CASRO Task Force Special Report, 1982. Available at: www.casro.org\/resprates.cfm. Accessed May 17, 2006"},{"key":"2021120823193283000_R14","unstructured":"Agency for Healthcare Research and Quality. National guideline clearinghouse. Available at: www.guideline.gov\/. Accessed May 17, 2006"},{"key":"2021120823193283000_R15","doi-asserted-by":"crossref","unstructured":"Cabana MD, Rand CS, Powe NR, et al. Why don't physicians follow clinical practice guidelines?JAMA.\u20081999;282:1458\u20131465","DOI":"10.1001\/jama.282.15.1458"},{"key":"2021120823193283000_R16","doi-asserted-by":"crossref","unstructured":"Kemper AR, Cohn LM, Fant KE, Dombkowski KJ, Hudson SR. Follow-up testing among children with elevated screening blood lead levels. 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