Published online May 1, 2006
PEDIATRICS Vol. 117 No. 5 May 2006, pp. S253-S260 (doi:10.1542/peds.2005-2633D)
This Article
Right arrow Full Text
Right arrow Full Text (PDF)
Right arrow Submit a response
Right arrow Alert me when this article is cited
Right arrow Alert me when eLetters are posted
Right arrow Alert me if a correction is posted
Services
Right arrow E-mail this article to a friend
Right arrow Similar articles in this journal
Right arrow Similar articles in PubMed
Right arrow Alert me to new issues of the journal
Right arrow Add to My File Cabinet
Right arrow Download to citation manager
Right arrow reprints & permissions
Citing Articles
Right arrow Citing Articles via CrossRef
Right arrow Citing Articles via Google Scholar
Google Scholar
Right arrow Articles by Feuchtbaum, L.
Right arrow Articles by Verghese, S.
Right arrow Search for Related Content
PubMed
Right arrow PubMed Citation
Right arrow Articles by Feuchtbaum, L.
Right arrow Articles by Verghese, S.
Related Collections
Right arrow Premature & Newborn

SUPPLEMENT ARTICLE

Tandem Mass Spectrometry Program Implementation Challenges for State Newborn Screening Programs: National Survey of Barriers and Issues

Lisa Feuchtbaum, DrPH, MPHa, Lisa Faulkner, PhDb and Shinu Verghese, MSb

a Genetic Disease Branch, California Department of Health Services, Richmond, California
b Public Health Institute, Berkeley, California

OBJECTIVE. A national survey was undertaken to identify the barriers faced by states that have already implemented tandem mass spectrometry (MS/MS) screening and those that have not yet done so.

METHODS. In April 2004, a 10-question survey was mailed to 106 individuals identified as key newborn screening contacts in each state. The survey requested information on issues that affected the state's ability to expand newborn screening to include MS/MS technology.

RESULTS. Representatives from 51 of 53 states/territories responded to the survey. Of the 51 responding states, 32 (63%) said that they are offering MS/MS screening currently. The top 2 issues that most affected the ability of states to add MS/MS screening were difficulty acquiring support within the organization (66%) and funding limitations (63%). The screening criteria that were most difficult to address were knowledge about the natural history of MS/MS-detectable disorders if untreated (37%), the short-term costs of screening and diagnosis (36%), and the long-term follow-up costs (34%). The top-ranked laboratory issues were the high costs of equipment and supplies (53%) and the development of appropriate population-specific cutoff values (41%). The top-ranked follow-up issues were the availability of accepted protocols and guidelines for MS/MS diagnostic evaluations (59%) and the availability of adequate educational materials describing the disorders (44%).

CONCLUSIONS. Several of the issues identified can be addressed through improved, more-comprehensive, patient surveillance systems that track patient health status and health services utilization, although other approaches need to be developed. Through a better understanding of these issues and challenges, the community of professionals who are concerned with the quality and scope of newborn screening may be better able to help states develop strategies to overcome these barriers.

Key Words: newborn screening • tandem mass spectrometry • program implementation

Abbreviations: MS/MS—tandem mass spectrometry

Accepted Dec 27, 2005.