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Neonatal α 1 ‐antitrypsin screening: parents' views and reactions 20 years after the identification of the deficiency state
Author(s) -
Sveger T,
Thelin T,
McNeil TF
Publication year - 1999
Publication title -
acta pædiatrica
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.772
H-Index - 115
eISSN - 1651-2227
pISSN - 0803-5253
DOI - 10.1111/j.1651-2227.1999.tb01103.x
Subject(s) - worry , medicine , anxiety , mental health , pediatrics , psychiatry
During 1972–74, 200 000 Swedish neonates were screened for α 1 ‐antitrypsin deficiency (α 1 ATD). The parents of the 22–23‐y‐old α 1 ATD children were asked about their views on the screening study, information and follow‐up of their children as well as physical and psychosomatic problems, which were compared with a matched control (MC) group. Of the original 122 α 1 ATD and MC parents, 85 α 1 ATD and 89 MC parents decided to participate. The neonatal period was considered the best time for screening by 88% of the responding parents. The care of the α 1 ATD individuals was assessed as positive or very positive by 84% of the parents. About 70% of the parents thought that the awareness of their child's α 1 ATD had affected their lives, the most common comment being an increased consciousness of smoky and dusty environments. No significant difference between α 1 ATD and control parents was found concerning worry about the child's health and future. When asked about symptoms related to their mental health, no difference was found concerning headache, sleep problems, stomach troubles or tiredness. α 1 ATD mothers had statistically significantly more anxiety than control mothers (χ 2 p < 0.01, Wilcoxon p < 0.02). The knowledge derived from the present and previous parts of the α 1 AT screening study is important with regard to presymptomatic testing for adult‐onset disease in children.