Frequency of high-quality communication behaviors used by primary care providers of heterozygous infants after newborn screening

Patient Education and Counseling

Volumn 90, Issue 2, 2013, Pages 226-232

  Farrell, Michael H ^a   Christopher, Stephanie A ^a  

^a MEDICAL COLLEGE OF WISCONSIN   (United States)

Author keywords

Newborn screening; Physician patient communication; Quality Improvement

Indexed keywords

ARTICLE; CYSTIC FIBROSIS; DOCTOR PATIENT RELATION; EMOTIONAL ATTACHMENT; HEALTH CARE QUALITY; HEALTH PERSONNEL ATTITUDE; HETEROZYGOSITY; HUMAN; INTERPERSONAL COMMUNICATION; MEDICAL DECISION MAKING; MEDICAL PRACTICE; NEWBORN SCREENING; OUTCOME ASSESSMENT; PARENTAL NOTIFICATION; PHYSICIAN ATTITUDE; PRIMARY MEDICAL CARE; PRIORITY JOURNAL; SICKLE CELL ANEMIA; SOCIAL PSYCHOLOGY; STRUCTURED QUESTIONNAIRE; TELEMEDICINE;

ADULT; ANEMIA, SICKLE CELL; ATTITUDE OF HEALTH PERSONNEL; COMMUNICATION; COMPREHENSION; CYSTIC FIBROSIS; EMPATHY; FEMALE; GENETIC TESTING; HETEROZYGOTE DETECTION; HUMANS; INFANT, NEWBORN; MALE; NEONATAL SCREENING; PARENTS; PRIMARY HEALTH CARE; PROFESSIONAL-FAMILY RELATIONS; QUALITY IMPROVEMENT; QUALITY INDICATORS, HEALTH CARE; TRUTH DISCLOSURE;

EID: 84872400716     PISSN: 07383991     EISSN: 18735134     Source Type: Journal    
DOI: 10.1016/j.pec.2012.10.024     Document Type: Article

References (76)

1. Allen D.B., Farrell P.M. Newborn screening: principles and practice. Adv Pediatr 1996, 43:231-270.
2. Pass K., Harris K., Lorey F., Choi R., Kling S. Update: newborn screening for sickle cell disease-California, Illinois, and New York, 1998. Morb Mortal Wkly Rep 2000, 49:729-731.
3. Bobadilla J.L., Farrell M.H., Farrell P.M. Applying CFTR molecular genetics to facilitate the diagnosis of cystic fibrosis through screening. Adv Pediatr 2002, 49:131-190.
4. Farrell P.M., Shen G., Splaingard M., Colby C.E., Laxova A., Kosorok M.R., et al. Acquisition of Pseudomonas aeruginosa in children with cystic fibrosis. Pediatrics 1997, 100:E2.
5. Farrell P.M., Kosorok M.R., Rock M.J., Laxova A., Zeng L., Lai H.C., 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.
6. National Newborn Screening and Genetics Resource Center. National Newborn Screening Information System (NNSIS) 2008 report and ongoing reports from 2010, Available from: 2010 [cited 26.10.11]. http://nnsis.uthscsa.edu/xreports.aspx%3FXREPORTID=10%26FORMID=13%26FCLR=1.
7. Collins JL, La Pean A, O'Tool FO, Eskra KL, Roedl SJ, Tluczek A, Farrell MH., Factors that influence parents' experiences with results disclosure after newborn screening Q4 identifies genetic carrier status for cystic fibrosis or sickle cell hemoglobinopathy. Patient Educ Couns 2012, in press, doi:10.1016/j.pec.2011.12.007.
8. Kai J., Ulph F., Cullinan T., Qureshi N. Communication of carrier status information following universal newborn screening for sickle cell disorders and cystic fibrosis: qualitative study of experience and practice. Health Technol Assess 2009, 13. 1-82, iii.
9. Hampton M.L., Anderson J., Lavizzo B.S., Bergman A.B. Sickle cell "nondisease" A potentially serious public health problem. Am J Dis Child 1974, 128:58-61.
10. Hosick MB. Protocol decided for sickle cell testing. The NCAA News; 2010.
11. Stein R. Colleges mandate sickle cell testing. Washington: Washington Post; 2010, p. A10.
12. Thomas K, Zarda B. N.C.A.A., question of bias over a test for a genetic trait. New York: The New York Times; 2010, p. D1.
13. Roter D.L., Hall J.A., Kern D.E., Barker L.R., Cole K.A., Roca R.P. Improving physicians' interviewing skills and reducing patients' emotional distress. A randomized clinical trial. Arch Intern Med 1995, 155:1877-1884.
14. Tluczek A., Murphy-Orland K., Cavangh L. Psychosocial consequences of false-positive newborn screens for cystic fibrosis: a relational family systems perspective. Qual Health Res 2010, 21:174-186.
15. Farrell M.H., Certain L., Farrell P.M. Genetic counseling and risk communication services of newborn screening programs. Arch Pediatr Adolesc Med 2001, 155:120-126.
16. Ciske D.J., Haavisto A., Laxova A., Rock L.Z., Farrell P.M. Genetic counseling and neonatal screening for cystic fibrosis: an assessment of the communication process. Pediatrics 2001, 107:699-705.
17. Ross L.F., Moon M.R. Ethical issues in genetic testing of children. Arch Pediatr Adolesc Med 2000, 154:873-879.
18. Fost N., Kaback N.M. Why do sickle screening in children?. Pediatrics 1973, 51:742-745.
19. McNeil T.F., Harty B., Thelin T., Aspegren-Jansson E., Svegar T. Identifying children at high somatic risk: long-term effects on mother-child interaction. Acta Psychiatr Scand 1986, 74:555-562.
20. Swerts A. Impact of genetic counseling and prenatal diagnosis for Down syndrome and neural tube defects. Birth Defects Orig Artic Ser 1987, 23:61-83.
21. Farrell M.H., Kuruvilla P. Assessment of parental understanding by pediatric residents during counseling after newborn genetic screening. Arch Pediatr Adolesc Med 2008, 162:199-204.
22. Farrell M.H., Kuruvilla P., Eskra K.L., Christopher S.A., Brienza R.S. A method to quantify and compare clinicians' assessments of patient understanding during counseling of standardized patients. Patient Educ Couns 2009, 77:128-135.
23. Deuster L., Christopher S.A., Donovan J., Farrell M.H. A method to quantify residents' jargon use during counseling of standardized patients about cancer screening. J Gen Intern Med 2008, 23:1947-1952.
24. Farrell M.H., Deuster L., Donovan J., Christopher S.A. Pediatric residents' use of jargon during counseling about newborn genetic screening results. Pediatrics 2008, 122:243-249.
25. Farrell M.H., Speiser J., Deuster L., Christopher S.A. Child health providers' precautionary discussion of emotions during communication about results of newborn genetic screening. Arch Pediatr Adolesc Med 2012, 166:62-67.
26. Farrell M.H., La Pean A., Ladouceur L. Content of communication by pediatric residents after newborn genetic screening. Pediatrics 2005, 116:1492-1498.
27. La Pean A., Farrell M.H. Initially misleading communication of carrier results after newborn genetic screening. Pediatrics 2005, 116:1499-1505.
28. Christopher SA, Ahmad NY, Bradford L, Collins JL, Eskra KL, La Pean A, et al. A method to assess the organizing behaviors used in physicians' counseling of parents, submitted for publication.
29. La Pean A., Collins J.L., Christopher S.A., Eskra K.L., Roedl S.J., Tluczek A., et al. A qualitative secondary evaluation of statewide follow-up interviews for abnormal newborn screening results for cystic fibrosis and sickle cell hemoglobinopathy. Genet Med 2012, 14:207-214.
30. Farrell M.H., Christopher S.A., Tluczek A., Kennedy-Parker K., La Pean A., Eskra K.L., et al. Improving communication between doctors and parents after newborn screening. Wis Med J 2011, 110:221-227.
31. Farrell M.H., Chan E.C., Ladouceur L.K., Stein J.M. A structured implicit abstraction method to evaluate whether content of counseling before prostate cancer screening is consistent with recommendations by experts. Patient Educ Couns 2009, 77:322-327.
32. Norman G.R., Tugwell P., Feightner J.W. A comparison of resident performance on real and simulated patients. J Med Educ 1982, 57:708-715.
33. Rethans J.J., Grosfeld F.J., Aper L., Reniers J., Westen J.H., van Wijngaarden J.J., et al. Six formats in simulated and standardized patients use, based on experiences of 13 undergraduate medical curricula in Belgium and the Netherlands. Med Teach 2012, 34:710-716.
34. Lane C., Rollnick S. The use of simulated patients and role-play in communication skills training: a review of the literature to August 2005. Patient Educ Couns 2007, 67:13-20.
35. Whelan G.P., Boulet J.R., McKinley D.W., Norcini J.J., van Zanten M., Hambleton R.K., et al. Scoring standardized patient examinations: lessons learned from the development and administration of the ECFMG Clinical Skills Assessment (CSA). Med Teach 2005, 27:200-206.
36. Dudley F. The simulated patient handbook: a comprehensive guide for facilitators and simulated patients 2012, Radcliffe Medical Press, London.
37. Comeau A.M., Accurso F.J., White T.B., Campbell P.W., Hoffman G., Parad R.B., et al. Guidelines for implementation of cystic fibrosis newborn screening programs: Cystic Fibrosis Foundation workshop report. Pediatrics 2007, 119:e495-e518.
38. Wisconsin State Laboratory of Hygiene. Health professionals guide to newborn screening, cystic fibrosis, Available from: [accessed 14.03.11]. http://www.slh.wisc.edu/newborn/guide/cystic_fibrosis.dot.
39. Christopher S, Collins J, Farrell M. Effort required to contact primary care providers after newborn screening identifies sickle trait. J Natl Med Assoc, in press.
40. Farrell M.H., Christopher S.A., La Pean A., Ladouceur L.K. The brief standardized communication assessment: a patient simulation method feasible for population-scale use in communication quality assurance. Med Encounter 2009, 23:64.
41. Mainz J. Defining and classifying clinical indicators for quality improvement. Int J Qual Health Care 2003, 15:523-530.
42. Coulehan J.L., Block M.R. The medical interview: mastering skills for clinical practice 2006, F.A. Davis Co., Philadelphia, xix, 409 pp. 5th ed.
43. Doctors talking with patients, patients talking with doctors: improving communication in medical visits 1992, Auburn House, Westport, Connecticut. D.L. Roter, J.A. Hall (Eds.).
44. Makoul G. Essential elements of communication in medical encounters: the Kalamazoo consensus statement. Acad Med 2001, 76:390-393.
45. Smith R.C., Marshall-Dorsey A.A., Osborn G.G., Shebroe V., Lyles J.S., Stoffelmayr B.E., et al. Evidence-based guidelines for teaching patient-centered interviewing. Patient Educ Couns 2000, 39:27-36.
46. Braddock C.H., Edwards K.A., Hasenberg N.M., Laidley T.L., Levinson W. Informed decision making in outpatient practice: time to get back to basics. J Amer Med Assoc 1999, 282:2313-2320.
47. Feinstein A. Clinical epidemiology: the architecture of clinical research 1985, WB Saunders, Philadelphia.
48. Farrell MH, La Pean A, Christopher SA. Content messages included by primary care providers in counseling about newborn screening results, 2012, manuscript in preparation.
49. Bensing J.M., Kerssens J.J., van der Pasch M. Patient-directed gaze as a tool for discovering and handling psychosocial problems in general practice. J Nonverbal Behav 1995, 19:223-242.
50. Seel N. Mental models in learning situations. Adv Psychol 2006, 138:85-110.
51. Quill T.E. Barriers to effective communication. The medical interview: clinical care, education and research 1995, Springer, New York. M. Lipkin, S.M. Putnam, A. Lazare (Eds.).
52. Johnson T.M., Hardt E.J., Kleinman A. Cultural factors in the medical interview. The medical interview: critical care, education and research 1995, Springer, New York. M. Lipkin, S.M. Putnam, A. Lazare (Eds.).
53. Lucas S. The art of public speaking 2001, McGraw Hill, Boston. 8th ed.
54. Thompson E.C. An experimental investigation of the relative effectiveness of organizational structure in oral communication. South Speech J 1960, 26:59-69.
55. Titsworth B.S. The effects teacher immediacy, use of organizational lecture cues, and students' notetaking on cognitive learning. Commun Educ 2001, 50:283-297.
56. Chesebro J.J., McCroskey J.C. The relationship of teacher clarity and immediacy with student state receiver apprehension, affect, and cognitive learning. Commun Educ 2001, 50:59-68.
57. Risk communication: a mental models approach 2001, Cambridge University Press, Cambridge, UK. M. Morgan, B. Fischhoff, A. Bostrom, C. Atman (Eds.).
58. Christopher S.A., Ahmad N.Y., Bradford L., Collins J.L., Eskra K.L., La Pean A., et al. A method to assess the use of organizing behaviors in physicians' conversation. Med Encounter 2010, 24:224.
59. Clark N.M., Cabana M.D., Nan B., Gong Z.M., Slish K.K., Birk N.A., et al. The clinician-patient partnership paradigm: outcomes associated with physician communication behavior. Clin Pediatr (Phila) 2008, 47:49-57.
60. Clever S.L., Jin L., Levinson W., Meltzer D.O. Does doctor-patient communication affect patient satisfaction with hospital care? Results of an analysis with a novel instrument variable. Health Serv Res 2008, 43:1505-1519.
61. Ong L.M., de Haes J.C., Hoos A.M., Lammes F.B. Doctor-patient communication: a review of the literature. Soc Sci Med 1995, 40:903-918.
62. Stewart M., Brown J.B., Donner A., McWhinney I.R., Oates J., Weston W.W., et al. The impact of patient-centered care on outcomes. J Fam Pract 2000, 49:796-804.
63. Cegala D.J., Marinelli T., Post D. The effects of patient communication skills training on compliance. Arch Fam Med 2000, 9:57-64.
64. Kaplan S.H., Greenfield S., Ware J.E. Assessing the effects of physician-patient interactions on the outcomes of chronic disease. Med Care 1989, 27:S110-S127.
65. Miller G.E. The assessment of clinical skills/competence/performance. Acad Med 1990, 65:S63-S67.
66. Roethlisberger F.J., Dickson W.K. Management and the worker 1939, Harvard University Press, Cambridge, MA.
67. Sanson-Fisher R.W., Poole A.D. Simulated patient and the assessment of medical students' interpersonal skills. Med Educ 1980, 14:249-253.
68. Donabedian A. An introduction to quality assurance in health care 2003, Oxford University Press, New York.
69. Jencks S.F., Huff E.D., Cuerdon T. Change in the quality of care delivered to medicare beneficiaries, 1998-1999 to 2000-2001. J Amer Med Assoc 2003, 289:305-312.
70. Tluczek A., Koscik R.L., Farrell P.M., Rock M.J. Psychosocial risk associated with newborn screening for cystic fibrosis: parents' experience while awaiting the sweat-test appointment. Pediatrics 2005, 115:1692-1703.
71. Tluczek A., Mischler E.H., Farrell P.M., Fost N., Peterson N.M., Carey P., et al. Parents' knowledge of neonatal screening and response to false-positive cystic fibrosis testing. J Dev Behav Pediatr 1992, 13:181-186.
72. Tluczek A., Mischler E.H., Bowers B., Peterson N.M., Morris M.E., Farrell P.M., et al. Psychological impact of false-positive results when screening for cystic fibrosis. Pediatr Pulmonol Suppl 1991, 7:29-37.
73. Mischler E.H., Wilfond B.S., Fost N., Laxova A., Reiser C., Sauer C.M., et al. Cystic fibrosis newborn screening: impact on reproductive behavior and implications for genetic counseling. Pediatrics 1998, 102:44-52.
74. Farrell M.H., Farrell P.M. Newborn screening for cystic fibrosis: ensuring more good than harm. J Pediatr 2003, 143:707-712.
75. Farrell MH, Christopher SA, Roedl SJ, O'Tool FO, Farrell PM. A rapid-throughput feedback intervention using a record card for population-scale communication quality assurance 2012, manuscript in preparation.
76. Burke W., Tarini B., Press N.A., Evans J.P. Genetic screening. Epidemiol Rev 2011, 33:148-164.