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

The risk of developing insulin-dependent diabetes mellitus (IDDM) is 50 tim es greater in first-degree relatives than in the genera I population. Altho ugh pa rents of a dia betic child are generally aware of the risk of diseas e recurrence in the family, the practice of screening for IDDM is often que stioned by physicians themselves because of the likelihood that parents wil l experience anxiety. This paper reports the results of a questionnaire dis tributed to parents attending a pediatric clinic for their diabetic child w ho were asked to evaluate their attitudes about screening tests. One hundre d and thirty-one families recruited over a 2-month period replied to the qu estionnaire without the assistance of medical staff. The mean age of diabet ic 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 o f a second case of IDDM among their children. Eighty percent of them practi sed home strip-analysis on a regular basis for all their children. The pare nts wanted biological tests to be performed on their children before the oc currence of any clinical symptoms. They expected the screening tests "to re veal the truth about the health status of their children" (92 %) and to "he lp prepare for an uncertain future" (60 %). They indicated that recognition of an increased risk would not change their attitude toward their child. R ecurrence of the disease was regarded as a problem with which the parents c ould cope realistically Our data indicate that parents should continue to b e informed about familial risk and the possibility of screening, despite th e lack of preventive treatment.