A questionnaire was sent to 561 insulin-treated diabetic patients aged 20-50 years living in the province of Västerbotten in Northern Sweden to assess their experience of living with diabetes. The response rate was 87% (n = 488). Differences in the experience of living with diabetes related to gender, age, duration of diabetes, and chronic diabetic complications were reported. Men seemed to underestimate problems related to diabetes more than women. They worried less about long-term complications and hypoglycaemia, but were more troubled by the limitation of personal freedom caused by their diabetes. In spite of their worries, women more often than men found positive aspects in having diabetes. Younger patients also had a more positive attitude towards their disease, even though they more often thought that diabetes had negatively affected their relationships with friends. Patients with a shorter diabetes duration were more concerned about the management of their diabetes than were patients with a long duration. The fear of chronic complications increased with diabetes duration. Chronic complications most affected patients' views of diabetes, their self-perception, and social life. Patients with childhood onset of diabetes knew less about the implications of the disease, and this reduced the intensity of their psychological response to the diagnosis. In conclusion, social and medical factors affected how diabetic patients perceived their disease. These findings suggest that the outcome of diabetes health care might improve if it was more individually adapted to each patient's personal experience of the disease and the psychological needs related to it.
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