Background: Newborn screening tests identify congenital diseases such as Cystic Fibrosis (CF) and Sickle Cell Hemoglobinopathy (SCH) early, but ethical concerns about comprehension and psychosocial complications (""""""""outcomes"""""""") after heterozygous results may delay implementation of new test technologies such as from the Human Genome Project. Physicians' limited genetic knowledge and communication skills may lead to disparities in communication outcomes, especially in families with socioeconomic barriers or limited access to care. Ethics research projects should study communication services during the design of systematic programs to assess and improve communication """"""""quality"""""""" and """"""""outcomes"""""""" on a population scale.
Specific Aims : (1) To identify attitudes and expectations for communication services among parents after positive newborn screening for CF or SCH. (2) To evaluate communication quality/competence of pediatricians before and after a randomized trial of an audit-and-feedback-style communication quality assurance intervention. (3) To identify incidence and risk factors for adverse communication outcomes after screening for CF/SCH, and determine whether feedback/support to physicians will improve outcomes. Setting/Participants: Parents of infants in New York and Wisconsin with positive screens for CF/SCH. Research Plan: The project will include (1) a targeted focus group study of parents' attitudes about communication services after newborn screening, (2) a telephone study to assess (audit) communication quality/competence and give feedback to physicians, and (3) a survey of parents of CF- and SCH-heterozygous infants to determine risk factors for poor comprehension and psychosocial outcomes. Career Development Plan: The principal investigator's goal is to become an independent investigator, focusing on ways to assess and improve the quality and outcomes of communication after newborn genetic screening. He will work closely with a team of mentors, advisors, and collaborators, and pursue a master's degree in Communication Sciences and a Certificate in Bioethics. Significance: It is hypothesized that communication quality/competence and outcomes vary greatly after newborn screening, but can be improved by audit and feedback. Progress in this area will generalize to other areas of communication and help streamline the implementation of new genetic testing technology.

Agency
National Institute of Health (NIH)
Institute
National Heart, Lung, and Blood Institute (NHLBI)
Type
Research Scientist Development Award - Research & Training (K01)
Project #
5K01HL072530-03
Application #
6914933
Study Section
Special Emphasis Panel (ZRG1-SNEM-2 (03))
Program Officer
Werner, Ellen
Project Start
2003-07-01
Project End
2008-06-30
Budget Start
2005-07-01
Budget End
2006-06-30
Support Year
3
Fiscal Year
2005
Total Cost
$126,375
Indirect Cost
Name
Medical College of Wisconsin
Department
Internal Medicine/Medicine
Type
Schools of Medicine
DUNS #
937639060
City
Milwaukee
State
WI
Country
United States
Zip Code
53226
Farrell, Michael H; Christopher, Stephanie A (2013) Frequency of high-quality communication behaviors used by primary care providers of heterozygous infants after newborn screening. Patient Educ Couns 90:226-32
La Pean, Alison; Farrell, Michael H; Eskra, Kerry L et al. (2013) Effects of immediate telephone follow-up with providers on sweat chloride test timing after cystic fibrosis newborn screening identifies a single mutation. J Pediatr 162:522-9
Collins, Jenelle L; La Pean, Alison; O'Tool, Faith et al. (2013) Factors that influence parents' experiences with results disclosure after newborn screening identifies genetic carrier status for cystic fibrosis or sickle cell hemoglobinopathy. Patient Educ Couns 90:378-85
La Pean, Alison; Collins, Jenelle L; Christopher, Stephanie A et al. (2012) A qualitative secondary evaluation of statewide follow-up interviews for abnormal newborn screening results for cystic fibrosis and sickle cell hemoglobinopathy. Genet Med 14:207-14
Bradford, Lisa; Roedl, Sara J; Christopher, Stephanie A et al. (2012) Use of social support during communication about sickle cell carrier status. Patient Educ Couns 88:203-8
Christopher, Stephanie A; Ahmad, Nadia Y; Bradford, Lisa et al. (2012) A method to assess the organizing behaviors used in physicians' counseling of standardized parents after newborn genetic screening. Commun Med 9:101-11
Christopher, Stephanie A; Collins, Jenelle L; Farrell, Michael H (2012) Effort required to contact primary care providers after newborn screening identifies sickle cell trait. J Natl Med Assoc 104:528-34
Farrell, Michael H; Speiser, Jodi; Deuster, Lindsay et al. (2012) Child health providers' precautionary discussion of emotions during communication about results of newborn genetic screening. Arch Pediatr Adolesc Med 166:62-7
Farrell, Michael H; Christopher, Stephanie A; Tluczek, Audrey et al. (2011) Improving communication between doctors and parents after newborn screening. WMJ 110:221-7
Farrell, Michael H; Kuruvilla, Pramita; Eskra, Kerry L et al. (2009) A method to quantify and compare clinicians' assessments of patient understanding during counseling of standardized patients. Patient Educ Couns 77:128-35

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