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Young adults with α 1 antitrypsin deficiency identified neonatally: their health, knowledge about and adaptation to the high‐risk condition
Author(s) -
Sveger T,
Thelin T,
McNeil TF
Publication year - 1997
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.1651-2227.1997.tb08828.x
Subject(s) - medicine , psychosocial , alpha (finance) , anxiety , psychiatry , clinical psychology , psychometrics , construct validity
The psychological and psychosocial consequences of screening for α 1 ‐antitrypsin deficiency (α 1 ATD) were investigated when the subjects were 5–7 years old. The present study was conducted when the subjects were 18–20 years old, the foci of interest being their health, psychosomatic problems, knowledge about α 1 ATD and the potential effect of that knowledge on their lives and future family planning. Samples of 61 PiZ and 61 demographically matched control subjects, 18–20 years old, were asked to participate. Written, structured questionnaires covered the following items: basic familial characteristics, psychosomatic symptoms, opinions on medical check‐ups, information and views on future α 1 ATD screening, whether the knowledge about α 1 ATD had affected the life and family planning of α 1 ATD individuals. Items concerning the “α 1 ATD matter” were excluded in the questionnaires given to the controls. Questionnaire data were obtained from 50 α 1 ATD and 48 control individuals, 41 of each being matched α 1 ATD‐control pairs. No significant differences were found in demographic or educational backgrounds, psychosomatic complaints such as headache, sleep difficulties, stomach ache, tiredness or anxiety. Lung symptoms occurred more frequently in α 1 ATD subjects ( p = 0.05). Six per cent of the α 1 ATD individuals planned working careers with a high risk of air pollution. The majority (86%) of the α 1 ATD subjects perceived the contact with the medical services as positive; 14% as both positive and negative. The information concerning α 1 ATD was assessed as satisfactory by 73%, as both good and bad by 17% and as unsatisfactory by 10%. All α 1 ATD subjects advocated general screening for α 1 ATD, the neonatal period being chosen as optimal by 94%. Half of the α 1 ATD individuals thought that the knowledge of their high‐risk condition had affected their lives, particularly their awareness of the dangers of smoking and environmental pollution. The majority, 88%, knew that they should avoid smoking to protect their lungs. In conclusion, no negative psychosocial consequences of the neonatal α 1 AT‐screening were found in early adulthood. The α 1 ATD individuals were aware of the dangers of smoking and were of the opinion that α 1 AT‐screening should be recommended.