Parental attitudes on expanded newborn screening in Hong Kong

Public Health

Volumn 126, Issue 11, 2012, Pages 954-959

  Mak, C M ^a   Lam, C W ^b   Law, C Y ^a,b   Siu, W K ^a   Kwong, L L T ^a   Chan, K L ^a   Chan, W T ^a   Chow, K M ^a   Lee, K W ^a   Chan, W P ^a   Chan, A Y W ^a  

^a PRINCESS MARGARET HOSPITAL   (Hong Kong)

^b UNIVERSITY OF HONG KONG   (Hong Kong)

Author keywords

Expanded newborn screening; Hong Kong Chinese; Parental attitudes; Second generation

Indexed keywords

AUTONOMY; HEALTH SURVEY; KNOWLEDGE; PARENTAL CARE; PUBLIC HEALTH;

ARTICLE; BLOOD SAMPLING; CROSS-SECTIONAL STUDY; FALSE NEGATIVE RESULT; FALSE POSITIVE RESULT; FUNDING; HEALTH CARE POLICY; HEALTH PROGRAM; HONG KONG; HUMAN; MAJOR CLINICAL STUDY; NEWBORN; NEWBORN ASSESSMENT; NEWBORN SCREENING; PARENTAL ATTITUDE; PATIENT COUNSELING; PATIENT EDUCATION; PRIMARY MEDICAL CARE;

CROSS-SECTIONAL STUDIES; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HONG KONG; HUMANS; INFANT, NEWBORN; METABOLISM, INBORN ERRORS; NEONATAL SCREENING; PARENTS; QUALITATIVE RESEARCH;

CHINA; HONG KONG;

EID: 84870378781     PISSN: 00333506     EISSN: 14765616     Source Type: Journal    
DOI: 10.1016/j.puhe.2012.08.002     Document Type: Article

References (36)

1. Lee H.C., Mak C.M., Lam C.W., Yuen Y.P., Chan A.O., Shek C.C., et al. Analysis of inborn errors of metabolism: disease spectrum for expanded newborn screening in Hong Kong. Chin Med J (Engl) 2011, 124:983-989.
2. Han L.S., Ye J., Qiu W.J., Gao X.L., Wang Y., Gu X.F. Selective screening for inborn errors of metabolism on clinical patients using tandem mass spectrometry in China: a four-year report. J Inherit Metab Dis 2007, 30:507-514.
3. Gu X., Wang Z., Ye J., Han L., Qiu W. Newborn screening in China: phenylketonuria, congenital hypothyroidism and expanded screening. Ann Acad Med Singap 2008, 37:107-114.
4. Niu D.M., Chien Y.H., Chiang C.C., Ho H.C., Hwu W.L., Kao S.M., et al. Nationwide survey of extended newborn screening by tandem mass spectrometry in Taiwan. J Inherit Metab Dis 2010, 33:S295-S305.
5. Yoon H.R., Lee K.R., Kim H., Kang S., Ha Y., Lee D.H. Tandem mass spectrometric analysis for disorders in amino, organic and fatty acid metabolism: two year experience in South Korea. Southeast Asian J Trop Med Public Health 2003, 34(Suppl. 3):115-120.
6. Yamaguchi S. Newborn screening in Japan: restructuring for the new era. Ann Acad Med Singap 2008, 37:13-15.
7. Rama Devi A.R., Naushad S.M. Newborn screening in India. Indian J Pediatr 2004, 71:157-160.
8. Wilcken B., Wiley V., Hammond J., Carpenter K. Screening newborns for inborn errors of metabolism by tandem mass spectrometry. N Engl J Med 2003, 348:2304-2312.
9. Schulze A., Lindner M., Kohlmuller D., Olgemoller K., Mayatepek E., Hoffmann G.F. Expanded newborn screening for inborn errors of metabolism by electrospray ionization-tandem mass spectrometry: results, outcome, and implications. Pediatrics 2003, 111:1399-1406.
10. Zytkovicz T.H., Fitzgerald E.F., Marsden D., Larson C.A., Shih V.E., Johnson D.M., et al. Tandem mass spectrometric analysis for amino, organic, and fatty acid disorders in newborn dried blood spots: a two-year summary from the New England newborn screening program. Clin Chem 2001, 47:1945-1955.
11. Chace D.H., Kalas T.A., Naylor E.W. The application of tandem mass spectrometry to neonatal screening for inherited disorders of intermediary metabolism. Annu Rev Genomics Hum Genet 2002, 3:17-45.
12. Millington D.S., Kodo N., Norwood D.L., Roe C.R. Tandem mass spectrometry: a new method for acylcarnitine profiling with potential for neonatal screening for inborn errors of metabolism. J Inherit Metab Dis 1990, 13:321-324.
13. Cipriano L.E., Rupar C.A., Zaric G.S. The cost-effectiveness of expanding newborn screening for up to 21 inherited metabolic disorders using tandem mass spectrometry: results from a decision-analytic model. Value Health 2007, 10:83-97.
14. Therrell B.L., Schwartz M., Southard C., Williams D., Hannon W.H., Mann M.Y. Newborn screening system performance evaluation assessment scheme (PEAS). Semin Perinatol 2010, 34:105-120.
15. Tran K., Banerjee S., Li H., Noorani H.Z., Mensinkai S., Dooley K. Clinical efficacy and cost-effectiveness of newborn screening for medium chain acyl-CoA dehydrogenase deficiency using tandem mass spectrometry. Clin Biochem 2007, 40:235-241.
16. Wilcken B. Mini-symposium: newborn screening for inborn errors of metabolism-clinical effectiveness. J Inherit Metab Dis 2006, 29:366-369.
17. Venditti L.N., Venditti C.P., Berry G.T., Kaplan P.B., Kaye E.M., Glick H., et al. Newborn screening by tandem mass spectrometry for medium-chain acyl-CoA dehydrogenase deficiency: a cost-effectiveness analysis. Pediatrics 2003, 112:1005-1015.
18. Insinga R.P., Laessig R.H., Hoffman G.L. Newborn screening with tandem mass spectrometry: examining its cost-effectiveness in the Wisconsin newborn screening panel. J Pediatr 2002, 141:524-531.
19. Pandor A., Eastham J., Beverley C., Chilcott J., Paisley S. Clinical effectiveness and cost-effectiveness of neonatal screening for inborn errors of metabolism using tandem mass spectrometry: a systematic review. Health Technol Assess 2004, 8(iii):1-121.
20. Wilson J.M.G., Jungner G. Principles and practice of screening for disease 1968, World Health Organization, Public Health Paper no. 34. Geneva, http://www.who.int/bulletin/volumes/86/4/07-050112bp.pdf.
21. Andermann A., Blancquaert I., Beauchamp S., Dery V. Revisiting Wilson and Jungner in the genomic age: a review of screening criteria over the past 40 years. Bull World Health Organ 2008, 86:317-319.
22. Zheng S., Song M., Wu L., Yang S., Shen J., Lu X., et al. China: public health genomics. Public Health Genomics 2009.
23. Newborn screening: toward a uniform screening panel and system-executive summary. Pediatrics 2006, 117:S296-S307. Expert Panel.
24. Walter J.H., Patterson A., Till J., Besley G.T., Fleming G., Henderson M.J. Bloodspot acylcarnitine and amino acid analysis in cord blood samples: efficacy and reference data from a large cohort study. J Inherit Metab Dis 2009, 32:95-101.
25. Whitehead N.S., Brown D.S., Layton C. Developing a conjoint analysis survey of parental attitudes regarding voluntary newborn screening 2010, RTI Press Publication No MR-0014-1003, RTI Press, Research Triangle Park, NC.
26. Hayeems R.Z., Miller F.A., Little J., Carroll J.C., Allanson J., Chakraborty P., et al. Informing parents about expanded newborn screening: influences on provider involvement. Pediatrics 2009, 124:950-958.
27. Huang M.C., Lin S.J. Newborn screening: should explicit parental consent be required?. Acta Paediatr Taiwan 2003, 44:126-129.
28. McCabe L.L., McCabe E.R. Expanded newborn screening: implications for genomic medicine. Annu Rev Med 2008, 59:163-175.
29. Dhondt J.L. Expanded newborn screening: social and ethical issues. J Inherit Metab Dis 2010, 33:S211-S217.
30. Therrell B.L. Ethical, legal and social issues in newborn screening in the United States. Southeast Asian J Trop Med Public Health 2003, 34(Suppl. 3):52-58.
31. Kwon C., Farrell P.M. The magnitude and challenge of false-positive newborn screening test results. Arch Pediatr Adolesc Med 2000, 154:714-718.
32. Chiang S.H., Wu K.F., Liu T.T., Wu S.J., Hsiao K.J. Quality assurance program for neonatal screening of glucose-6-phosphate dehydrogenase deficiency. Southeast Asian J Trop Med Public Health 2003, 34(Suppl. 3):130-134.
33. El-Hattab A.W., Li F.Y., Shen J., Powell B.R., Bawle E.V., Adams D.J., et al. Maternal systemic primary carnitine deficiency uncovered by newborn screening: clinical, biochemical, and molecular aspects. Genet Med 2010, 12:19-24.
34. Lin H.J., Neidich J.A., Salazar D., Thomas-Johnson E., Ferreira B.F., Kwong A.M., et al. Asymptomatic maternal combined homocystinuria and methylmalonic aciduria (cblC) detected through low carnitine levels on newborn screening. J Pediatr 2009, 155:924-927.
35. Hinton C.F., Ojodu J.A., Fernhoff P.M., Rasmussen S.A., Scanlon K.S., Hannon W.H. Maternal and neonatal vitamin B12 deficiency detected through expanded newborn screening - United States, 2003-2007. J Pediatr 2010, 157:162-163.
36. Prosser L.A., Ladapo J.A., Rusinak D., Waisbren S.E. Parental tolerance of false-positive newborn screening results. Arch Pediatr Adolesc Med 2008, 162:870-876.