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Telephone follow-up increases timely sweat chloride testing after cystic fibrosis newborn screening

NEW YORK (Reuters Health) – When a single cystic fibrosis (CF) mutation is found on newborn screening, immediate telephone follow-up increases the rate of sweat chloride testing before eight weeks of age, a new study shows.

“We were pleasantly surprised to find that primary care provider (PCP) calls made by our study team were, in fact, positively affecting patient care,” Dr. Philip M. Farrell from the University of Wisconsin-Madison told Reuters Health by email. “We were also excited that the impact was not only on community-affiliated clinics, but trended toward significance at a larger academic medical center as well.”

“Though they are not emergent results, ‘likely CF carrier’/’possible CF’ results do require prompt follow-up,” Dr. Farrell said. “We should emphasize the importance of getting the follow-up sweat chloride test early to ensure (the) baby gets the full benefits of newborn screening.”

Dr. Farrell and colleagues reviewed the effects of two interventions on sweat chloride testing outcomes: reporting “possible CF” newborn screening results via fax alone, or via fax plus simultaneous telephone contact with PCPs.

There were 301 infants in the fax-plus-phone-call group and 355 in the fax-only group, as reported online October 24 in The Journal of Pediatrics.

Ultimately, only 26 infants (7%) in the fax-only group and 15 (5%) in the phone-call group did not undergo sweat chloride testing (p=0.113), “underlining efficacy for fax-only reporting,” the authors wrote.

Significantly more infants in the telephone intervention group, however, underwent “timely” sweat chloride testing, i.e., before they were eight weeks old (85.4% vs 77.5%; p=0.010).

More infants in the telephone group also underwent sweat chloride testing by six weeks of age (84% vs 76%; p=0.009).

The benefits of the telephone intervention were significant at community-affiliated medical centers, according to the researchers, and one academic medical center showed a trend toward significant enhancement of timely sweat chloride testing rates.

“It is likely that all providers may benefit from telephone follow-up when they are responsible for the care of an infant with an abnormal newborn screening (NBS) result,” Dr. Farrell said. “Even in areas with a higher population density, it is uncommon for primary care providers to get more than one to two results of this type per year.”

“Being able to have a brief conversation with an allied health professional to review the details of the NBS report along with suggestions for results disclosure and follow-up would likely benefit many providers,” Dr. Farrell added. “This is particularly true since this is not a result seen often in primary care clinics, so providers will likely spend a comparable (or greater) amount of time researching the information on their own before talking to the families.”

“Providers should make sure they know the meaning of the NBS result and why the result is considered ‘abnormal,'” he continued. “If uncertain, they should call the NBS lab or the nearest CF Center to get an explanation. They should also know the chances of the infant actually having CF in their state (likely <5%) and let the family know that information. These results can be quite anxiety provoking for new parents, and they expect (and deserve) a thorough, knowledgeable explanation. Before the family leaves clinic, providers should assist the family in scheduling the follow-up sweat test with the appropriate sweat test center."


J Pediatr 2012.