How Have Patients Reacted to the Implications of the DCCT? CHRIS J. THOMPSON, MD J. FRASER R. CUMMINGS, MBCHB JOHN CHALMERS, MRCP CRAIG GOULD, MSC RAY W. NEWTON, FRCP OBJECTIVES — To assess the reactions of people with insulin-treated diabetes (ITD) to the results of the Diabetes Control and Complications Trial (DCCT). RESEARCH DESIGN AND METHODS — A leaflet documenting the purpose and re- sults of the DCCT was circulated to all 771 patients ages 15-60 years with ITD attending our clinic. Patients were invited to complete and return a questionnaire on their responses. RESULTS — Of 550 respondents, 330 felt encouraged to improve glycemic control. Female respondents (P — 0.003) and younger age-groups (15-25 years, P = 0.001) were most likely to want to improve control. Patients with long duration of diabetes (>20 years, P = 0.00001), hypoglycemia unawareness (P = 0.0001), or previous severe hypoglycemia (P = 0.001) were less likely to want to improve their control. Fear of hypoglycemia concerned all age-groups, whereas female respondents were most likely to be worried about the potential for weight gain (P = 0.00006). CONCLUSIONS — Knowledge of the results of the DCCT encourages significant numbers of patients to want to improve glycemic control. Fear of hypoglycemia and, in women, weight gain may prove significant impediments to the clinical implementation of the results of the DCCT. T he results of the Diabetes Control and Complications Trial (DCCT) showed that intensive treatment to improve glycemic control in type I diabe- tes could delay the onset and slow the progression of retinopathy, nephropathy, and neuropathy (1). The results have pro- voked widespread discussion and ap- praisal of the organization and provision of services for people with insulin-treated diabetes (ITD) (2,3)- The patient popula- tion in the DCCT was, however, highly selected and motivated, with an unrepre- sentatively high mean intelligence quo- tient; and the practical implications of the study to the management of the patient population of a typical diabetic clinic are unclear, particularly because the inten- sively treated group had a three times greater risk of severe hypoglycemia and a mean weight gain of 10 lb. Furthermore, one quarter of ITD patients have hypogly- cemia unawareness (4), which increases the risk of severe hypoglycemia, and hy- poglycemia unawareness was used as a criterion to exclude entry into the DCCT (5). Anecdotal reports suggest that the re- sults of the DCCT have left patients un- moved or discouraged (6) and that young people with diabetes are more concerned about the threat to their driver's licenses as a result of hypoglycemia than the risk of renal failure later in life (7), but no sys- tematic survey of patient reactions to the DCCT results has been undertaken. We distributed a clear summary of the results of the DCCT to a large population of pa- tients with ITD and present here the re- sults of a questionnaire of their reactions. RESEARCH DESIGN AND METHODS — A leaflet documenting the purpose and main results of the DCCT was circulated to all 771 patients with ITD between the ages of 15 and 60 years who were attending our diabetes clinics. This From the Diabetes Centre and the Statistics Section, Department of Child Health, Ninewells Hospital, Dundee, Scotland. Please send correspondence to CJ. Thompson, MD, Victoria Infirmary, Langside Road, Glasgow G42 9TY, Scotland. Received for publication 28 August 1995 and accepted in revised form 7 March 1996. DCCT, Diabetes Control and Complications Trial; ITD, insulin-treated diabetes. cohort included patients with type I dia- betes and patients with insulin-treated type II diabetes. Our hospital is the sole provider of diabetes care in our catch- ment area (Dundee and surrounding dis- trict, population 300,000), and on the ba- sis of local insulin prescription figures, we calculate that 90.2% of patients with ITD attend our diabetes clinics; the clinical de- tails of this cohort of patients have already been described (8). The leaflet included specific details of the benefits shown in the DCCT in an intensively treated group and also of the increase in the frequency of severe hypoglycemia and weight gain (1). Included with the leaflet was an anon- ymous questionnaire seeking information on patients' sex, age-group, duration of diabetes, number of daily insulin injec- tions, home blood glucose results, fre- quency of blood glucose monitoring, hy- poglycemia, and severe (grade IV) hypoglycemia. Awareness of hypoglyce- mia was ascertained by inviting patients to answer "yes" or "no" to the question "Do you normally get good warning for hypos?" Six marker questions were in- cluded to test understanding of the results of the DCCT. Respondents were asked, "Would the results of the DCCT encour- age you to control your blood sugars at lower levels than you do at present?" Those in agreement then answered ques- tions on the measures they would be pre- pared to take and their associated con- cerns. Respondents who felt that the DCCT did not encourage them to im- prove glycemic control were questioned about their reasons. All responses were coded by two authors (J.F.R.C. and J.C.), and the responses were entered in a data- base (FoxPro for Windows, Microsoft, Se- attle, WA) for subsequent analysis. Statistical analysis was performed using the x 2 test, an d logistic regression analysis was performed using SPSS for Windows (SPSS, Chicago, IL) where ap- propriate. RESULTS— There were 550 replies from 771 questionnaires; 35 unanswered questionnaires were also returned, repre- senting an overall response rate of 74.7%. Replies came from 286 male patients and 876 DIABETES CARE, VOLUME 19, NUMBER 8, AUGUST 1996 Downloaded from http://diabetesjournals.org/care/article-pdf/19/8/876/515523/19-8-876.pdf by guest on 02 March 2022