Communications systems and their models: Massachusetts parent compliance with recommended specialty care after positive cystic fibrosis newborn screening result

Anne Marie Comeau; Richard Parad; Robert Gerstle; Brian P O'Sullivan; Henry L Dorkin; Mark Dovey; Kenan Haver; Tom Martin; Roger B Eaton

doi:10.1016/j.jpeds.2005.08.007

Communications systems and their models: Massachusetts parent compliance with recommended specialty care after positive cystic fibrosis newborn screening result

J Pediatr. 2005 Sep;147(3 Suppl):S98-100. doi: 10.1016/j.jpeds.2005.08.007.

Authors

Anne Marie Comeau¹, Richard Parad, Robert Gerstle, Brian P O'Sullivan, Henry L Dorkin, Mark Dovey, Kenan Haver, Tom Martin, Roger B Eaton

Affiliation

¹ New England Newborn Screening Program of the University of Massachusetts Medical School, MA 02130, USA. [email protected]

PMID: 16202793
DOI: 10.1016/j.jpeds.2005.08.007

Abstract

Objective: To evaluate compliance with recommendations for sweat testing/specialty evaluation and genetic counseling after a positive cystic fibrosis newborn screening (CF NBS) result.

Study design: All infants with positive CF NBS results require a diagnostic sweat test at a CF center. Results that were "screen positive and diagnosis negative" prompted family genetic counseling. Parent compliance with follow-up protocol recommendations was retrospectively analyzed relative to the communications model in place at a particular CF Center.

Results: At each of the 5 MA CF centers, 95% of the CF NBS-positive infants completed recommended sweat testing. In contrast, there was wide disparity in compliance (32%-90%) with completion of genetic counseling between CF centers.

Conclusion: CF centers that escorted parents through the 2 recommended follow-up steps in 1 day had higher compliance with the second step (genetic counseling) than centers that required a return visit for genetic counseling.

Publication types

Comparative Study
Evaluation Study
Research Support, Non-U.S. Gov't
Research Support, U.S. Gov't, Non-P.H.S.

MeSH terms

Aftercare / organization & administration
Communication*
Cystic Fibrosis* / diagnosis
Cystic Fibrosis* / therapy
Decision Making
Genetic Counseling / statistics & numerical data*
Health Knowledge, Attitudes, Practice
Humans
Infant, Newborn
Massachusetts
Models, Organizational
Models, Psychological
Neonatal Screening / psychology*
Parental Consent
Parents / education
Parents / psychology*
Patient Acceptance of Health Care* / psychology
Patient Acceptance of Health Care* / statistics & numerical data
Program Evaluation
Retrospective Studies
Time Factors