Communications Systems and their Models: Massachusetts Parent Compliance with Recommended Specialty Care after Positive Cystic Fibrosis Newborn Screening Result - 21/08/11
, Richard Parad, MD, MPH, Robert Gerstle, MD, Brian P. O’Sullivan, MD, Henry L. Dorkin, MD, Mark Dovey, MD, Kenan Haver, MD, Tom Martin, MD, Roger B. Eaton, PhD
Reprint requests: Anne Marie Comeau, PhD, New England Newborn Screening Program of University of Massachusetts Medical School, 305 South St, Jamaica Plain, MA 02130.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.
Le texte complet de cet article est disponible en PDF.Keyword : CF, DNA, MA, NBS, NENSP
Plan
| Supported in part by Program Funds of the New England Newborn Screening Program of University of Massachusetts Medical School and in part by the Health Resource and Services Administration grant no. 5 H46 MC 00198-02. |
Vol 147 - N° 3S
P. S98-S100 - septembre 2005 Retour au numéro
Article précédent
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