Epidemiology/Health Services/Psychosocial Research O R I G I N A L
A R T I C L E
Prevalence and Characteristics of Diabetic Patients With No Ongoing Care in South Auckland DAVID SIMMONS, FRACP CAROLE FLEMING, RGN
OBJECTIVE — To describe the prevalence of default from diabetes care and to reveal associated characteristics among patients with known diabetes in urban South Auckland, New Zealand. RESEARCH DESIGN AND METHODS — We developed a cross-sectional household study of patients with known diabetes and compared those patients with and without ongoing care. Ongoing care was defined as having been clinically reviewed at least once in the previous 10 months. RESULTS — Of the 1,488 European, Maori, and Pacific Islander subjects with known diabetes, 107 (6.3%) had not seen a general practitioner or a diabetes service in the previous 10 months. Subjects not attending a diabetes service were more likely than subjects attending a diabetes service to have been diagnosed when screened asymptomatically (11.7 vs. 5.2%, P = 0.008) and after gestational diabetes (39.7 vs. 11.7%, P 0.001). Maori were most likely to have no ongoing care (10.8 vs. 5.8% European and 6.6% of Pacific Islander subjects, P = 0.01). Nonattenders were younger, were diagnosed at a younger age, knew less about diabetes, were less satisfied with past care, and were less likely to require medication. CONCLUSIONS — The elevated number of diabetic individuals not attending ongoing care is a significant problem in this population, and it may reflect a decisional balance as seen in problem behaviors. Diagnosis when asymptomatic may contribute to default from ongoing care; in this case, caution is required if population-based screening programs are being considered. Diabetes Care 23:1791–1793, 2000
he delivery of quality care to patients with type 2 diabetes is associated with a significant reduction in long-term complications (1,2). However, quality care is associated with a burden on diabetic patients to make major changes in their lifestyle, including regular self–glucose monitoring, taking medication, and receiving clinical assessments at least every 3 months. These activities must be completed with the uncertainty that all complications can be prevented and even when the patient is feeling well.
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Balancing the potential long-term benefits of intensive ongoing care with the dayto-day demands of diabetic life remains difficult. For some patients with additional barriers to care and self-care, the long-term benefits of participation in some or even all aspects of quality diabetes care are inadequate to justify. There are many barriers to both self-care (3) and the delivery of care (4). For some, these barriers result in default from ongoing care; this can be associated with a greater rate of morbidity (5) and a substantial impact on appointments for
From the Department of Rural Health (D.S.), University of Melbourne, Shepparton, Victoria, Australia; and the Diabetes Projects Trust (C.F.), Middlemore Hospital, Auckland, New Zealand. Address correspondence and reprint requests to Prof. David Simmons, Department of Rural Health, Faculty of Medicine, Dentistry and Health Sciences, University of Melbourne, P.O. Box 6500, Shepparton VIC 3632. E-mail:
[email protected]. Received for publication 25 April 2000 and accepted in revised form 25 August 2000. A table elsewhere in this issue shows conventional and Système International (SI) units and conversion factors for many substances.
DIABETES CARE, VOLUME 23, NUMBER 12, DECEMBER 2000
other patients (6). An extensive review has recently been undertaken to describe the characteristics of such patients with both diabetes and other chronic diseases (5). Previous studies involving patients with type 2 diabetes have all focused on those attending specialist clinics (7–9); none focused on the extent of the problem in the community as a whole. During a door-to-door survey of known diabetes in a multiethnic population (3), we identified a number of patients without any ongoing care by either general practitioners or diabetes specialist services. We then compared the characteristics of those patients with no ongoing care for at least 10 months (i.e., at least three assessment defaults) with patients who had attended care at least once in the preceding 10 months. RESEARCH DESIGN AND METHODS — A household survey was taken between 1991 and 1994 in three districts of inner urban South Auckland, New Zealand, as previously described (3). The area was selected because of its high proportion of Maori and Pacific Islander people. Briefly, all houses were visited up to 15 times by a locally recruited multiethnic team to undertake a baseline census and to identify all residents with known diabetes. The presence of known diabetes for each patient was confirmed by comparison with general practitioners, diabetes clinics, and diabetes research databases. Residents were defined as those living in the house for 4 months or longer. The age, sex, and selfreported ethnic group of all household residents were recorded. Data were obtained for 91% of households. In the household survey, diabetes knowledge was assessed by a brief open questionnaire, as previously reported, and converted into a percentage score (10). The questionnaire included four questions: 1) What is diabetes? 2) What symptoms can you get with a high sugar level? 3) What damage can diabetes cause? and 4) How is diabetes treated? Patient satisfaction was assessed by one question: “In general, are you satisfied with your diabetes care?” 1791
Diabetic patients with no ongoing care
Table 1—Proportion of patients with known diabetes with and without care provided by general practitioners and/or diabetes services within the last 10 months
n Age (years) Male Non-European Age at diagnosis (years) Diabetes knowledge Dissatisfied with care No diet treatment at diagnosis No diet treatment now Tablet treatment now Insulin treatment now Currently taking blood pressure tablets Past laser therapy Known cataract and/or blindness (at least one eye) Past known heart attack or stroke Current smokers Paid employment Higher education
Attenders
Nonattenders
P
1,381 56 ± 15 44 66 47 ± 16 41 ± 27 8 13 13 64 19 38 13 17 13 29 25 11
107 51 ± 15 41 73 43 ± 15 33 ± 22 29 23 47 23 5 11 6 9 6 27 34 18
— 0.01 NS NS 0.05 0.01 0.001 0.01 0.001 0.001 0.001 0.001 0.05 0.05 0.01 NS 0.05 NS
Data are means ± SD or %, unless otherwise indicated.
Treatment defaulters were defined as diabetic patients identified as having seen no one for their diabetes (general practitioner or local diabetes service) in the previous 10 months (i.e., patients who missed three quarterly appointments). Because the area had an adequate number of general practitioners and a comprehensive diabetes service, including the Maori and Pacific Islands Community Diabetes Educators, services were able to effectively reach the Polynesian communities. Statistical analyses Analyses were determined using SPSS for Windows version 9.0 (SPSS, Chicago). Simple comparisons were made using either a 2 test or an analysis of variance. The Mantel-Haenszel test was used to adjust for age when comparing circumstances at the time of diagnosis. Logistic regression was undertaken using a direct approach, and the
derived odds ratio (95% CI) was shown. P 0.05 was considered significant. The study was approved by the North Health Ethics Committee. RESULTS — The questions relating to attendance were answered by 1,488 of 1,709 (87.1%) subjects (European 89.5%, Maori 85.8%, Pacific Islander 87.1%, and others 78.0%). Overall, 107 of 1,488 (6.3%) subjects completing the questionnaire had seen neither a general practitioner nor a diabetes service over the previous 10 months. Maori were most likely to be receiving no care (European 29 of 501 [5.8%], Maori 39 of 357 [10.9%], Pacific Islander 37 of 559 [6.6%], and others 2 of 71 [2.8%]; P = 0.01, between ethnic group difference in nonattendance rate). Table 1 compares the characteristics of diabetic patients attending care with diabetic patients not attending care. No significant
difference between the two groups was found for the length of time each subject resided at the current address (14 ± 13 years), the age at completing school (16 ± 4 years), or the proportions with past lower-limb amputation and foot ulceration. Diabetes had been present for 10 years in 23% of nonattenders but in 33% of attenders (P 0.05). Nonattenders were most likely to have been first diagnosed between 20 and 39 years of age (34 vs. 23%, respectively, P 0.05). Only three of the nonattenders were likely to have type 1 diabetes (insulin at diagnosis, insulin currently, and age at onset 30 years), and those with probable type 1 diabetes were less likely (NS) not to attend care than those with type 2 diabetes (5.0 vs. 7.3%, respectively, P = 0.51). Table 2 compares the self-reported circumstances by which the patient was diagnosed. Nonattenders were more likely to have been diagnosed after gestational diabetes and after screening while asymptomatic. In addition, nonattenders were less likely to have been diagnosed with a diabetes-related symptom. Table 3 shows the overall logistic regression comparing attenders and nonattenders. CONCLUSIONS — In this study, we have described the extent of nonattendance for diabetes care and the characteristics of nonattenders from a community rather than specialist clinic cohort. The data conflict with those from specialist clinics and studies of type 1 diabetes care, which have suggested that nonattenders are more likely to suffer from complications (8,9) and are more likely to smoke (9). The data do confirm the findings of Graber et al. (9), who showed that nonattenders are less likely to have been prescribed medication. Subjects not receiving care had poor self-care skills, including bad dietary adherence, which correlated with less diabetes knowledge. Although those who did not attend care are clearly a heterogeneous group, many of those failing to appreciate the risk to their lives had a similar risk of complications and
Table 2—Circumstances at time of diabetes diagnosis Attenders Nonattenders Diagnosed after gestational diabetes (women only) Diagnosed with symptoms of diabetes Diagnosed with complications of diabetes (e.g., myocardial infarction, stillbirth) Diagnosed at the time of nondiabetic symptoms or management of nondiabetic conditions Diagnosed after screening asymptomatic individual
11.7 71.7 5.7 16.4 5.2
39.7 42.7 4.3 21.4 11.7
P
Odds ratio* (95% CI)
0.001 0.001 0.66 0.08 0.008
3.46 (1.81–6.62) 0.32 (0.22–0.50) 0.81 (0.32–2.05) 1.56 (0.94–2.57) 2.46 (1.27–4.77)
Data are %, unless otherwise indicated. *Crude frequencies are shown. Odds ratios are adjusted for age using the Mantel-Haenszel test.
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Simmons and Fleming
Table 3—Logistic regression comparing characteristics of attenders and nonattenders Odds ratio
95% CI
P
8.44 7.35 3.02 2.89 2.29 0.34
3.15–22.62 4.24–12.75 1.64–5.54 1.42-5.85 1.21–4.34 0.15–0.79
0.001 0.001 0.001 0.005 0.05 0.05
Currently prescribed insulin therapy Currently prescribed oral diabetes agent Not satisfied with diabetes care Currently prescribed antihypertensive medication Received dietary advice at diagnosis Diagnosed after gestational diabetes (vs. diagnosed after diabetic symptoms)
death as those who attended care. Nonattenders experienced earlier onset of disease and probably included those between diagnosis or overcoming one problem and a diabetes-related event or symptom. The length of time of nonattendance and the reason for seeking care were not addressed, but the higher proportion of control subjects with damage may suggest that some of those with no ongoing care were not seen until tissue damage had occurred (or they died before being seen). A number of key themes emerge from the data, and one can speculate that many of the patients may have made their decisions based on the balance of perceived benefits and disadvantages of attending care. This “decisional balance” may be comparable with that involved in the control of addictive and other behaviors (11). We have previously shown in this population that the greatest personal barrier to care is formed when the perceived benefits of selfcare are outweighed by the perceived disadvantages (3). Others have also considered default as part of “reasoned decision-making” (12). The benefits of controlling diabetes are less likely to be appreciated by those diagnosed when asymptomatic, not requiring medication, currently undamaged, and with less knowledge of the potential harm. Although dissatisfaction with past care may be a mitigating factor against engaging with health services, assessment of satisfaction in part has its own difficulties, particularly as it reflects expectation (13). The negative economic impact of participation in health services in both time and out-of-pocket expenses is suggested by the greater proportion of defaulters in paid employment. The costs of diabetes do impede self-care in South Auckland (14). The latter may reflect a combination of income threshold and lack of knowledge about how to access benefits (and perhaps services). The greater level of education
among defaulters (NS) is curious, and implications of this correlation require further investigation. We did not assess health beliefs or locus of control, and these may serve as additional contributors to the decisions made. A thorough review was undertaken by Griffin (5). Family support and the wider social environment have also been shown to be important elsewhere (15). The greater number of dropouts after gestational diabetes may reflect more family commitments, although the discontinuity of care between specialist and general practice services may also contribute. The greater quantity of default by those diagnosed when asymptomatic may indicate the need for caution with public screening for diabetes in asymptomatic individuals if an outcome approach is to be adopted. In conclusion, we have shown that in a multiethnic community, those defaulting from care have a range of mitigating factors that may influence their decision-making. We would recommend the development and evaluation of a decisional balance screening tool to identify those at risk of defaulting and to test whether they would benefit from earlier support. A review of public screening for diabetes in asymptomatic individuals, particularly if separate from those expected to provide ongoing care, is supported by these data. Acknowledgments — We thank North Health Research Council, South Auckland Health, Eli Lilly, Novo Nordisk, Boehringer Mannheim, Bristol Myers Squibb, and AMP Society for their support (either financially or in kind). We are grateful to Christina Tapu and Professor Sir John Scott for their advice and to Greg Gamble for statistical advice. We are grateful to the South Auckland Diabetes Project team (now known as the Diabetes Projects Trust) and to the people of South Auckland for their ongoing involvement in the work of the South Auckland Diabetes Project.
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