Access to Primary Care and Subspecialty Care After Positive Cystic Fibrosis Newborn Screening

Accessibility by telephone to cystic fibrosis (CF) centers for a diagnostic sweat test appointment from a parental perspective—which can be stressful—compared to experience in contacting a general pediatrics practice in the same area.

We called each CF center and affiliate twice, plus a sample of multiphysician general pediatrics practices selected from yellowpages.com after being matched by area and ZIP codes to 50 randomly selected CF centers, including Wisconsin’s 2 nationally accredited centers. After alerts to CF centers nationally, we made follow-up calls to randomly selected centers. A call was considered successful if the center or practice provided the time and date of the next available sweat test or well-baby checkup appointment.

In contrast to calls made to general pediatricians’ offices, in which 98% were successful and an appointment was available in an average of 8.6 days, only 31% of CF centers and affiliates could be contacted successfully. Although a sweat test appointment was available in 4.9 days on average, delays as long as 26 days were possible. In subsequent follow-up calls, only 40% were successful.

Substantial difficulties and inconsistencies were encountered in accessing CF centers, suggesting that parents often may be challenged in their efforts, while they generally have no difficulty contacting and scheduling an appointment with a general pediatrician. This contrasting experience could be stressful to parents when their baby has a positive screening test. The role of primary care physicians in newborn screening communications is increasingly important, while the role of regional centers needs reconsideration.