16 CF newborn screening in Uruguay: improvements in IRT methodology

Abstract

diagnosis 25.8 days (range 1–63, s.d. 13.2). By end of year 1, 30% grew Pseudomonas (inc aeruginosa), 36% had abnormal chest x-rays, 27% required IV antibiotics. No correlation between number of contacts with the team and abnormal x-ray, need for intravenous antibiotics, psychosocial issues or positive respiratory (lavage & cough swab) samples in year 1. Children with pancreatic insufficiency had more contacts with the nurse in the year following diagnosis (16 contacts more, 95%CI 4.6–27.3, p = 0.007) than children who were pancreatic sufficient. Per additional week of oral antibiotics, children had 0.7 more contacts (95%CI 0.1 to 1.3, p = 0.025). When both variables were taken into account, pancreatic insufficiency and an additional week of oral antibiotics were associated with 14.5 more contacts (95%CI 3.7–25.4, p = 0.01) and 0.6 more contacts (95%CI 0.04–1.1, p = 0.04) respectively. Conclusion: Data shows more communication with parents whose children are pancreatic insufficient and need more oral antibiotics. It is unclear whether this reflects increased clinical need or parental anxiety. Screening has revolutionised CF care and we employ a policy of frequent contact & support responsive to parental needs.