Where Do People With Diabetes Obtain Information About Their Disease?

Kay M. Rosheim, MPH, COMT, and Jinnet B. Fowles, PhD

Abstract

Objective. To identify the range of educational sources used by people with diabetes to learn about their disease and to describe the personal characteristics associated with the use of each source.

Research Design and Methods. The sample included individuals aged 31-64 years who were continuously enrolled in the BlueCross BlueShield BluePlus of Minnesota health maintenance organization for 12 months and who responded to a telephone survey in 1996 (n = 844). Personal characteristics included age, gender, education, race, income, urban or rural residence, and nature of diabetes treatment.

Results. Nearly everyone (99.5%) sought advice from one or more sources. Eighty percent of respondents reported using at least four different educational resources. Almost two-thirds of the respondents (63.2%) reported attending a class to learn about diabetes management. Respondents who used insulin were more likely to receive information from each of the sources listed compared with those not on insulin.

Physicians, nurses, and dietitians were the primary sources of information overall. People living in rural communities more often relied on a pharmacist for information about their diabetes than did those in urban neighborhoods. Using more sources was directly related to having higher income, being older, and being female.

Conclusions. Although physicians, nurses, and dietitians were the primary sources of information, they were not the only sources. More than three-fourths of the respondents (80%) reported using at least four different educational resources. These results highlight the variety of sources that people with diabetes consult. Health care professionals should be alert to the varied educational preferences of their patients and be prepared to offer educational opportunities through a variety of media.

The influence of education on clinical outcomes for people with diabetes is well documented in the literature.^1-6 Hospital admissions for people whose diabetes is not controlled are often due to patients' lack of information about diabetes.² Results of the Diabetes Control and Complications Trial suggest that increasing patients' knowledge is one key for achieving and maintaining near-normal glycemic levels.⁷

One of the objectives of Healthy People 2000: National Health Promotion and Disease Prevention Objectives is for 75% of people with diabetes to receive diabetes education by 2000.⁸ According to the Healthy People 2000Review1995­1996, 43% of those surveyed reported attending a class on diabetes management, a 10% increase over baseline results from the 1989 National Health Interview Survey (NHIS).⁹

A study done in the early 1980s on a sample of adults with diabetes living in Michigan found that only one-third (32%) reported attending a course or class in diabetes management.¹⁰ Similarly, data from the 1989 NHIS on a sample of 2,405 adults with diabetes found that 33% reported attending a class about diabetes management some time after their diabetes was diagnosed.¹¹

Aside from the ongoing publication of the NHIS results that provide data on class attendance, there has been little published about the education sources people consult about their diabetes or on how their educational preferences vary with personal characteristics. The purpose of this study was to identify the range of educational sources used and to describe personal characteristics associated with the use of each source.

Research Design and Methods
As part of a larger study,¹² we conducted a telephone survey of BlueCross BlueShield BluePlus of Minnesota health maintenance organization (HMO) members with diabetes. Using the Health Plan Employer Data and Information Set (HEDIS) 2.0 algorithm, we identified individuals with diabetes through administrative claims data. (HEDIS offers a core set of performance measures developed for use primarily by employers who are purchasing health care for employees. It was designed to aid employers in estimating the purchasing value of their health care dollars and in holding a health plan accountable for its performance.) Individuals were included in the original study sample if they were aged 31­64 years as of December 31, 1994, were continuously enrolled during the prior 12 months, and had one or more prescriptions for insulin or oral agents, or if they had one or more International Classification of Diseases, 9th Revision (ICD-9) codes indicating diabetes mellitus (250.xx) or diabetic cataract (366.41).

We used electronic directory assistance to obtain telephone numbers for 1,479 individuals. Telephone interviews were conducted in January 1996. Most of the interviews were done in the evening and on weekends. Interviewers made up to four attempts to reach each person. These calls were distributed across weekdays and weekends and across times of day. The average length of the interview was 10 minutes. To determine whether individuals were eligible to complete the telephone interview, we asked if they were insured by BlueCross BlueShield BluePlus of Minnesota and if they had diabetes.

The telephone interview included the diabetes core questions from the Behavioral Risk Factor Surveillance Survey developed by the Centers for Disease Control and Prevention¹³ and two questions patterned after the 1989 National Health Interview Survey regarding how individuals obtained information about diabetes. One question asked, "Have you ever taken a course or class on how to manage your diabetes?" The second question asked, "Have you obtained information about diabetes from any of the following sources: 1) doctor or nurse at doctor's office, 2) doctor or nurse at hospital, 3) dietitian or nutritionist, 4) pharmacist, 5) another person with diabetes, 6) diabetes support group, 7) diabetes magazine, newsletter, or brochure, 8) book, television, or radio, 9) any other source?" Respondents were permitted to identify more than one source.

Open-ended responses to "other source" were analyzed for content by three independent reviewers. Any differences in classification were resolved by consensus. The "other" category included family or friends, the Internet, a family member with medical training, a respondent surveyed with medical training, an insurer, a health fair, camps for people with diabetes, industry, experience as a research participant, and employer.

We also measured personal characteristics, including age, gender, race, educational level, income, location of residence (urban or rural), and whether the respondent was receiving insulin.

After we inspected the data frequencies and made logic checks to assure data accuracy and consistency, we conducted bivariate analyses to determine the relationship between each independent variable of interest and the dependent variables. Categorical variables were analyzed with standard, unadjusted chi-square statistics. A P-value of 0.05 was selected to indicate statistical significance. A variable representing the total number of educational sources was computed by summing each of the individual sources. We analyzed the relationship of the total number of sources to each independent variable using t-tests and analysis of variance, as appropriate. Data analysis was performed using the SAS statistical package.¹⁴

Results
From our sample of 1,479 individuals, 133 (9.0%) were ineligible. Reasons for ineligibility included not having diabetes or having gestational diabetes only (4.9%), not being covered by BlueCross BlueShield BluePlus (2.0%), and deceased (1.0%). Less than 1% of the attempted interviews could not be conducted due to other circumstances, such as the respondent being unable to speak English, hearing impaired, hospitalized, or too ill to participate.

Of the 1,346 eligible individuals, 844 (62.7%) completed the interview, 153 (10.3%) refused to participate, and 349 (23.6%) could not be reached. We compared respondents with nonrespondents and found no significant differences in age, gender, or urban or rural location of residence. This sample from Minnesota was predominately middle-aged, male, white, and had better than high school education (Table 1).

Almost everyone (99.5%) received information from at least one of the listed sources. The two primary sources of information were the physician or the nurse at the physician's office (93.1%) and a dietitian (85.0%). Respondents who used insulin were more likely to receive information from each of the sources listed compared with those not on insulin. Table 2 lists the frequency for each of the sources reported and the differences for men and women.

Use of hospital or clinic-based sources of information, such as counseling by a personal physician, nurse, or dietitian or participating in a hospital program, did not vary by personal characteristics. Use of other sources, however, did vary by personal traits.

Class attendance. Sixty-three percent of the respondents reported attending a class to learn about diabetes management. Women were more likely to take a class than were men (70.4% vs. 58.0%, P = 0.001). In addition, those with any college education more often reported attending classes than those with a high school education or less (66.7% vs. 57.5%, P = 0.02).

Information from pharmacist. Respondents who live in rural areas were more likely to receive information from their pharmacist than those living in urban areas (33.0% vs. 22.5%, P = 0.001). People who use insulin also more frequently received information from their pharmacist than those who do not use insulin (36.7% vs. 6.7%, P = 0.001).

Information from another person with diabetes. Women were more likely than men to report receiving information from another person with diabetes (56.5% vs. 49.3%, P = 0.04). Those with an annual income of <$35,000 were less likely to receive information from another person with diabetes than were those with incomes $35,000­$50,000 and those with incomes >$50,000. (47.1% vs. 59.8% vs. 51.6%, P = 0.04).

Information from diabetes support group. Respondents with any college education reported receiving information from a support group more often than those with a high school education or less (19.6% vs. 10.7%, P = 0.003). In addition, older respondents depended on support groups more often than did their younger counterparts.

Information from media. Women used media sources more than did men. Women reported reading about diabetes in a diabetes magazine, newspaper, or brochure more often than did men (73.0% vs. 64.2%, P = .007), or by reading books, watching television, or listening to the radio (62.3% vs. 48.5%, P = 0.001).

Use of diabetes magazines, newspapers, or brochures increased with higher education and income. Almost 73% of respondents with any college experience found diabetes-related information in magazines, newspapers, or brochures compared to those with less education (72.9% vs. 60.2%, P = 0.001). More than 75% of respondents who reported earning >$50,000 per year used this source of information (P = 0.001). Those earning >$35,000 per year reported using information from books, television, and radio more frequently than those with lower incomes (P = 0.02). Younger respondents used books, television, and radio more frequently than older respondents (P = 0.006).

Number of educational sources used. We analyzed the total number of educational sources each respondent used. Most of the respondents (97%) used more than one source. Figure 1 shows the distribution of the respondents by the number of sources named. Women used more sources then did men (mean 5.5 vs. 5.0, P = 0.001). There was no difference in the number of sources used based on the respondents' geographic location.

The number of sources was inversely related to age. Younger people used more sources than older people. Table 3 displays the mean and standard deviation for each educational source by respondent characteristics.

Conclusions
In this study, we documented the diversity of information sources used by people with diabetes. We found significant differences in the choice of information according to personal characteristics. While use of some clinic-based sources are not influenced by personal characteristics of the respondents, use of other sources may vary by age, gender, educational level, income, or geographic location.

Our sample is a relatively homogeneous group of insured, well-educated, male, predominately white respondents living in the upper Midwest United States with access to health care. These characteristics may explain the higher attendance at classes (63%) compared with the results of the Michigan study (32%) and the National Health Interview Surveys of 1989 (33%) and 1993 (43%).⁹ In the national sample, more people received diabetes education if they lived in urban areas and in the midwest region of the United States and had higher income and education. Our evidence is consistent with those results.

One of the most interesting findings was the percentage of people in the rural setting who relied on a pharmacist for their education about diabetes. This finding highlights the changing role of pharmacists in providing drug use review and patient counseling.¹⁵ Increased responsibility of pharmacists for patient education may be a result of the Omnibus Budget Recognition Act of 1990 (OBRA '90).¹⁶ This legislation required that pharmacists counsel their patients about the prescriptions received and engage in prospective drug use review for Medicaid recipients.¹⁷

Another striking finding was the difference by gender regarding the amount of information needed as well as the preferred methods of obtaining information. Whenever there was a difference in the use of information sources between women and men, women tended to use a given source more frequently. Women were more likely than men to choose interactive, people-oriented methods, such as support groups or talking with another person with diabetes, as well as to use print and visual media.

In an earlier study of people having coronary artery bypass grafting, researchers found that women had significantly more information needs than men, especially relating to activities of living and quality-of-life issues.¹⁸ In addition, in a study of Pennsylvania residents, researchers found that women relied on informal networks for health information more frequently than did men.¹⁹

A better understanding of similarities and differences in educational needs between men and women is important so that health care professionals can more suitably address the needs of all of their patients.

There are limitations to the degree to which our findings can be generalized. The study is confined to an HMO population in one midwestern state. Membership in such a relatively homogeneous group may imply a set of values or motivating sources to seek information regarding diabetes that differ from the general population.²⁰ Nonetheless, the sample reflects broad age, education, and income ranges.

The goal of Healthy People 2000: National Health Promotion and Disease Prevention is to have 75% of people with diabetes receiving diabetes education. Within this HMO, we are rapidly approaching that goal.⁹ Our study results indicate that 63% of respondents reported attending a class on diabetes. Although physicians, nurses, and dietitians were sources of information for 93.1% of our study respondents, many reported receiving information from a variety of sources.

Health care professionals should be alert to the varied educational preferences of their patients and be prepared to offer educational opportunities through a variety of media. Health care professionals must also recognize that patients frequently receive information from sources that may not be congruent with providers' own messages.

Acknowledgments
This project was funded by grants from the BlueCross and BlueShield Medical Foundation, the Park Nicollet Medical Foundation, and the Methodist Hospital Foundation. The authors wish to thank Charles McCoy, MD, Cheryl Craft, RN, and Lark Arrichiello for their major contributions to the completion of this study and Elizabeth Kind, MS, RN, for her editorial assistance.

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Kay M. Rosheim, MPH, COMT, is a research associate, and Jinnet B. Fowles, PhD, is vice president of research and director of the Health Research Center, Institute for Research and Education, HealthSystem Minnesota, in Minneapolis.

Address correspondence and requests for reprints to Kay M. Rosheim, MPH, COMT, 14785 IRonwood Ct., Eden Prarie, MN 55346

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