title: Neonatal alpha1-antitrypsin screening: parents' views and reactions 20 years after the identification of the deficiency state.
abstract: During 1972-74, 200000 Swedish neonates were screened for alpha1-antitrypsin deficiency (alpha1ATD). The parents of the 22-23-y-old alpha1ATD 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 alpha1ATD and MC parents, 85 alpha1ATD 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 alpha1ATD 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 alpha1ATD had affected their lives, the most common comment being an increased consciousness of smoky and dusty environments. No significant difference between alpha1ATD 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. Alpha1ATD mothers had statistically significantly more anxiety than control mothers (chi2 p<0.01, Wilcoxon p<0.02). The knowledge derived from the present and previous parts of the alpha1AT screening study is important with regard to presymptomatic testing for adult-onset disease in children.
authors.affiliation: Department of Pediatrics, University Hospital, Malmö, Sweden.
authors.forename: T
authors.initials: T
authors.lastname: Sveger
authors.forename: T
authors.initials: T
authors.lastname: Thelin
authors.forename: T F
authors.initials: TF
authors.lastname: McNeil
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D001007:Anxiety / Q000209:etiology*; D001294:Attitude to Health; D016022:Case-Control Studies; D017281:Cost of Illness; D005260:Female; D005500:Follow-Up Studies; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008603:Mental Health; D008875:Middle Aged; D015997:Neonatal Screening; D010290:Parents / Q000193:education / Q000523:psychology*; D011795:Surveys and Questionnaires; D013548:Sweden; D019896:alpha 1-Antitrypsin Deficiency / Q000150:complications* / Q000175:diagnosis*