Parental knowledge reduces long term anxiety induced by false-positive test results after newborn screening for cystic fibrosis.

BACKGROUND: False-positive screening results in newborn screening for cystic fibrosis may lead to parental stress, family relationship problems and a changed perception of the child's health. AIM OF THE STUDY: To evaluate whether parental anxiety induced by a false positive screening result disappears after six months and to assess whether a special program to inform parents prior and during the screening procedure prevents or diminishes parental anxiety. METHODS: Prospective controlled study assessing the long term effects of false-positive test results of newborn screening for cystic fibrosis (NBSCF) on parental anxiety and stress by means of questionnaires sent to parents of 106 infants with a false positive newborn screening test and 318 randomly selected infants with a true negative screening test. Additionally we interviewed 25 parents of the false-positive group. RESULTS: Parents showed negative feelings after being informed about the positive screening test result. After confirmation that their child was healthy and not suffering from CF, most parents felt reassured. After six months no difference in anxiety levels between both groups of parents was found. Well-informed parents in the false positive group experienced less stress. CONCLUSIONS: A positive screening test result induces parental anxiety but false positive test results in NBSCF do not seem to cause long-term anxiety. Well-informed parents show lower stress and anxiety levels.

[Medicinal management of pain and symptoms following the withdrawal of treatment in babies and children]. / Medicamenteuze pijn- en symptoombestrijding bij het staken van de behandeling bij pasgeborenen en kinderen.

We present three cases to illustrate the end-of-life care after withdrawal of mechanical ventilation. In a one-year-old girl with meningococcal septic shock, muscle relaxants were continued when mechanical ventilation was withdrawn. In a 10-day-old girl with perinatal asphyxia a high dose of fentanyl was given before mechanical ventilation was withdrawn. A 6-week-old girl in a vegetative state was fighting for breath after detubation. At the request of the parents to end this condition, vecuronium bromide was given. In these three cases death was probably brought forward by a maximum of 12-24 hours. Three arguments can be presented to justify this: the relief of suffering, the perceptions of the parents and the fact that death was expected within a very short time. The administration of these medicines cannot, however, be considered normal medical practice. Therefore we argue that these cases should be reviewed by the national expert review committee and guidelines should be developed for appropriate palliative care after the withdrawal ofmechanical ventilation.