Risk assessment for developing type 1 diabetes: intentions of behavioural changes prior to risk notification

BACKGROUND: Recent progress in predictive techniques allows people at risk of developing type 1 diabetes to be identified in a pre-symptomatic stage and prevention trials to be implemented. The present study examined prospectively whether participants in a screening programme anticipated behavioural changes in the event of having a high risk. METHODS: Four hundred and three first-degree relatives of people with type 1 diabetes completed a self-administered questionnaire about their views on screening and diabetes, and questionnaires on well-being and locus of control. RESULTS: Prior to risk notification, 73% reported that they intended to introduce lifestyle changes if at high risk. The vast majority of the respondents (87%) reported that eating habits would be the main changes made. Those anticipating changes believed they could take actions to reduce their risk of type 1 diabetes (p<0.001) and to have personal control over diabetes onset (p<0.001). They were also more worried about developing diabetes (p<0.01) and preoccupied with diabetes-related symptoms (p<0.01). CONCLUSIONS: Prior to risk notification, the process of being screened raised concerns and expectations about future changes. Despite the lack of any evidence, people believed lifestyle changes would be effective in reducing their risk. Since the impact of lifestyle in the development of type 1 diabetes is not yet established, accurate information about the role of health behaviour in the progression to overt diabetes is needed to avoid unrealistic expectations on the benefit of these changes and unnecessary impairment to quality of life. Personally initiated changes should be monitored since they could importantly influence the progress and outcome of prevention trials.