What are disease perceptions and subjective treatment goals of insulin treated diabetic patients?

BACKGROUND: Despite increasing importance of patient self-management, little is known about their own perceptions and treatment goals. OBJECTIVES: The aim of this explorative study was to examine what diabetic patients perceive as most concerning and what their own treatment goals are. METHODS: A 23-item anonymous questionnaire was distributed among type 1 diabetic patients treated with and without an insulin pump and insulin treated type 2 diabetic patients in the outpatient clinic of a University Hospital. 86% of the questionnaires were returned (n = 124). RESULTS: In open-ended questions, patients in all three groups together felt mostly restricted by their loss of freedom (24%), the dietary restrictions (17%) and the need to measure blood glucose (17%). Patients treated with an insulin pump worried more about hypoglycaemia and less about dietary restrictions. In closed-ended questions, patients were mostly concerned about hypoglycaemia and developing complications. However, the main treatment goal of both groups together was long-term good blood glucose control (63%). Further patient goals were the prevention of complications (27%) and the preservation of a good quality of life. Quality of life was a more important goal for type 1 diabetic patients (29%) than for type 2 diabetic patients (0%). Patients thought that blood glucose control was more important for their physicians (main treatment goal for 86%) than for themselves. CONCLUSION: Insulin treated patients with diabetes spontaneously express concerns about their actual quality of life and daily hassles and mention long-term worries after explicit questioning. For their main treatment goals they choose mainly long-term goals. According to the patients, physicians tend to overestimate blood glucose control