Appraisal and implications of predictive testing for insulin-dependent diabetes mellitus

Abstract

The risk of developing insulin-dependent diabetes mellitus (IDDM) is 50 times greater in first-degree relatives than in the general population. Although parents of a diabetic child are generally aware of the risk of disease recurrence in the family, the practice of screening for IDDM is often questioned by physicians themselves because of the likelihood that parents will experience anxiety. This paper reports the results of a questionnaire distributed to parents attending a pediatric clinic for their diabetic child who were asked to evaluate their attitudes about screening tests. One hundred and thirty-one families recruited over a 2-month period replied to the questionnaire without the assistance of medical staff. The mean age of diabetic children was 10 +/- 4.05 years, and the duration of IDDM 3 +/- 3.6 years. The results show that parents were stressed by the possible development of a second case of IDDM among their children. Eighty percent of them practised home strip--analysis on a regular basis for all their children. The parents wanted biological tests to be performed on their children before the occurrence of any clinical symptoms. They expected the screening tests "to reveal the truth about the health status of their children" (92%) and to "help prepare for an uncertain future" (60%). They indicated that recognition of an increased risk would not change their attitude toward their child. Recurrence of the disease was regarded as a problem with which the parents could cope realistically. Our data indicate that parents should continue to be informed about familial risk and the possibility of screening, despite the lack of preventive treatment.