Parental tolerance of false-positive newborn screening results.

Parental tolerance of false-positive newborn screening results. Research Abstract Details 

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Parental tolerance of false-positive newborn screening results. Abstract Text:

OBJECTIVE: To measure parental tolerance for a false-positive newborn screening result by assessing perceived quality of life for screening results and health states associated with expanded newborn screening programs for metabolic disorders. DESIGN: Perceived quality of life was measured using time trade-off and willingness-to-pay questions for a false-positive newborn screening result and other conditions associated with metabolic disorders (ie, short-term hospitalization, dietary treatments, and developmental delay). SETTING: Telephone or in-person interviews were conducted from October 1, 2004, through January 31, 2006, for 2 populations in Massachusetts and Pennsylvania. PARTICIPANTS: Parents of children who had a false-positive newborn screening result (n = 91) and parents of children with normal screening results (n = 50). INTERVENTION: Telephone interviews. MAIN OUTCOME MEASURES: Time trade-off and willingness-to-pay amounts. RESULTS: Median time trade-off and willingness-to-pay amounts for parents of children with false-positive screening results were both 0 compared with parents of children with normal screening results who had median values of 1 week (P = .07) and $100 (P < .001). For both populations, dietary treatments and developmental delay elicited higher time trade-off and willingness-to-pay amounts compared with ratings for experiencing a false-positive newborn screening result or short-term hospitalization because of an undiagnosed metabolic disorder. CONCLUSIONS: Parents have a high tolerance for false-positive newborn screening results. Preferences for test outcomes and other health states associated with screening for metabolic disorders should be included in cost-effectiveness and cost-benefit analyses of expanded newborn screening programs.

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Parental tolerance of false-positive newborn screening results. Journal Published:

PUBLICATION TYPE: Research Support, N.I.H., Extr

Journal: Archives of pediatrics & adolescent medicine

VOLUME: 162

Page Numbers: 870-6

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ISSN: 1538-3628

DAY: 2

MONTH: Sep

YEAR: 2008

Parental tolerance of false-positive newborn screening results. Information

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LANGUAGE: eng

NlmUniqueID: 9422751

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Grant and Affiliation Information for Parental tolerance of false-positive newborn screening results.

AFFILIATION: Department of Ambulatory Care and Prevention, Harvard Medical School and Harvard Pilgrim Health Care, 133 Brookline Ave, Sixth Floor, Boston, MA 02215, USA. lisa_prosser@hphc.org

Country: United States

AGENCY: United States NHGRI

GRANT: 2R01HG002085-04

ACRONYM: HG

MEDLINETA: Arch Pediatr Adolesc Med

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