A qualitative secondary evaluation of statewide follow-up interviews for abnormal newborn screening results for cystic fibrosis and sickle cell hemoglobinopathy

Genetics in Medicine

Volumn 14, Issue 2, 2012, Pages 207-214

  La Pean, Alison ^a   Collins, Jenelle L ^a   Christopher, Stephanie A ^a   Eskra, Kerry L ^a   Roedl, Sara J ^a   Tluczek, Audrey ^b   Farrell, Michael H ^a  

^a MEDICAL COLLEGE OF WISCONSIN   (United States)

^b UNIVERSITY OF WISCONSIN MADISON SCHOOL OF NURSING   (United States)

Author keywords

sickle cell trait; cystic fibrosis carrier; follow up counseling; newborn Screening; provider patient communication

Indexed keywords

ADULT; ARTICLE; CYSTIC FIBROSIS; DISEASE CARRIER; FEMALE; FOLLOW UP; HUMAN; MALE; NEWBORN SCREENING; NONPARAMETRIC TEST; QUALITATIVE ANALYSIS; SICKLE CELL ANEMIA; TELECONSULTATION;

EID: 85027918460     PISSN: 10983600     EISSN: 15300366     Source Type: Journal    
DOI: 10.1038/gim.0b013e31822dd7b8     Document Type: Article

References (32)

1. Pass K, Harris K, Lorey F, Choi R, Kling S. Update: newborn screening for sickle cell disease-California, Illinois, and New York, 1998. MMWR 2000;49:729-731.
2. Salvatore D, Buzzetti R, Baldo E, et al. An overview of international literature from cystic fibrosis registries 2. Neonatal screening and nutrition/growth. J Cyst Fibros 2010;9:75-83.
3. Farrell PM, Kosorok MR, Rock MJ, et al. Early diagnosis of cystic fibrosis through neonatal screening prevents severe malnutrition and improves long-term growth. Wisconsin Cystic Fibrosis Neonatal Screening Study Group. Pediatrics 2001;107:1-13. (Pubitemid 32055408)
4. Farrell PM, Lai HJ, Li Z, et al. Evidence on improved outcomes with early diagnosis of cystic fibrosis through neonatal screening: enough is enough! J Pediatr 2005;147(suppl 3):S30-S36. (Pubitemid 41400256)
5. Tsaras G, Owusu-Ansah A, Boateng FO, Amoateng-Adjepong Y. Complications associated with sickle cell trait: a brief narrative review. Am J Med 2009;122:507-512.
6. Hamosh A, FitzSimmons SC, Macek M Jr, Knowles MR, Rosenstein BJ, Cutting GR. Comparison of the clinical manifestations of cystic fibrosis in black and white patients. J Pediatr 1998;132:255-259. (Pubitemid 28125176)
7. Hadlow J, Pitts M. The understanding of common health terms by doctors, nurses and patients. Soc Sci Med 1991;32:193-196.
8. Beckman HB, Frankel RM. The effect of physician behavior on the collection of data. Ann Intern Med 1984;101:692-696. (Pubitemid 15223315)
9. Marvel MK, Epstein RM, Flowers K, Beckman HB. Soliciting the patient's agenda: have we improved? JAMA 1999;281:283-287. (Pubitemid 29058122)
10. Ley P. Communicating With Patients: Improving Communication, Satisfaction and Compliance. Croom Helm: London, 1988.
11. Miller FA, Paynter M, Hayeems RZ, et al. Understanding sickle cell carrier status identified through newborn screening: a qualitative study. Eur J Hum Genet 2010;18:303-308.
12. Cavanagh L, Compton CJ, Tluczek A, Brown RL, Farrell PM. Long-term evaluation of genetic counseling following false-positive newborn screen for cystic fibrosis. J Genet Couns 2010;19:199-210.
13. Tluczek A, Koscik RL, Modaff P, et al. Newborn screening for cystic fibrosis: parents' preferences regarding counseling at the time of infants' sweat test. J Genet Couns 2006;15:277-291. (Pubitemid 44252996)
14. Lang CW, McColley SA, Lester LA, Ross LF. Parental understanding of newborn screening for cystic fibrosis after a negative sweat-test. Pediatrics 2011;127:276-283.
15. Robertson EF, Hill GN, Pollard AC. Evaluation of a state-wide neonatal screening programme. Med J Aust 1979;1:365-367. (Pubitemid 9229144)
16. Parsons EP, Clarke AJ, Hood K, Lycett E, Bradley DM. Newborn screening for Duchenne muscular dystrophy: a psychosocial study. Arch Dis Child Fetal Neonatal Ed 2002;86:F91-F95. (Pubitemid 34250885)
17. Rothenberg MB, Sills EM. Iatrogenesis: the PKU anxiety syndrome. J Am Acad Child Psychiatry 1968;7:689-692.
18. Gurian EA, Kinnamon DD, Henry JJ, Waisbren SE. Expanded newborn screening for biochemical disorders: the effect of a false-positive result. Pediatrics 2006;117:1915-1921. (Pubitemid 46071234)
19. Sorenson JR, Levy HL, Mangione TW, Sepe SJ. Parental response to repeat testing of infants with 'false-positive' results in a newborn screening program. Pediatrics 1984;73:183-187. (Pubitemid 14188501)
20. Tluczek A, Koscik RL, Farrell PM, Rock MJ. Psychosocial risk associated with newborn screening for cystic fibrosis: parents' experience while awaiting the sweat-test appointment. Pediatrics 2005;115:1692-1703. (Pubitemid 43843181)
21. Beucher J, Leray E, Deneuville E, et al. Psychological effects of false-positive results in cystic fibrosis newborn screening: a two-year follow-up. J Pediatr 2010;156:771-6, 776.e1.
22. National Newborn Screening and Genetics Resource Center. National Newborn Screening Information System (NNSIS) 2008 report and ongoing reports from 2010. http://nnsis.uthscsa.edu. Accessed 1 February 2011.
23. Farrell MH, Christopher SA, Tluczek A, et al. Improving communication between doctors and patients after newborn screening. Wisconsin Med J 2011;110:221-227.
24. Department of Health and Human Services, Code of Federal Regulations, Title 45 Public Welfare, Part 46 Protection of Human Subjects. http://www.hhs.gov/ohrp/policy/ohrpregulations.pdf. Accessed 11 June 2011.
25. Comeau AM, Accurso FJ, White TB, et al. Guidelines for implementation of cystic fibrosis newborn screening programs: Cystic Fibrosis Foundation workshop report. Pediatrics 2007;119:e495-e518. (Pubitemid 46397760)
26. Wisconsin State Laboratory of Hygiene, Health Professionals Guide to Newborn Screening, Cystic Fibrosis. http://www.slh.wisc.edu/newborn/guide/ cystic-fibrosis.dot. Accessed 14 March 2011.
27. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res 2005;15:1277-1288. (Pubitemid 41645161)
28. Morgan DL. Qualitative content analysis: a guide to paths not taken. Qual Health Res 1993;3:112-121.
29. Miles MB, Huberman AM. Qualitative Data Analysis: An Expanded Sourcebook. Sage: Thousand Oaks, CA, 1994.
30. Morse JM, Field PA. Qualitative Research Methods for Health Professionals, 2nd edn. Sage: Thousand Oaks, CA, 1995.
31. Coffey A, Atkinson P. Making Sense of Qualitative Data: Complimentary Research Strategies. Sage: Thousand Oaks, CA, 1996.
32. Patton MQ. Qualitative Research and Evaluation Methods. Sage: Thousand Oaks, CA, 2002.