Interviewer effects in public health surveys.

Interviewer effects can have a substantial impact on survey data and may be particularly operant in public health surveys, where respondents are likely to be queried about racial attitudes, sensitive behaviors and other topics prone to socially desirable responding. This paper defines interviewer effects, argues for the importance of measuring and controlling for interviewer effects in health surveys, provides advice about how to interpret research on interviewer effects and summarizes research to date on race, ethnicity and gender effects. Interviewer effects appear to be most likely to occur when survey items query attitudes about sociodemographic characteristics or respondents' engagement in sensitive behaviors such as substance use. However, there is surprisingly little evidence to indicate whether sociodemographic interviewer-respondent matching improves survey response rates or data validity, and the use of a matched design introduces possible measurement bias across studies. Additional research is needed to elucidate many issues, including the influence of interviewers' sociodemographic characteristics on health-related topics, the role of within-group interviewer variability on survey data and the simultaneous impact of multiple interviewer characteristics. The findings of such research would provide much-needed guidance to public health professionals on whether or not to match interviewers and respondents on key sociodemographic characteristics.

Prolapse severity, symptoms and impact on quality of life among women planning sacrocolpopexy.

OBJECTIVES: To explore the relationship between severity of pelvic organ prolapse (POP), symptoms of pelvic dysfunction and quality of life using validated measures. METHOD: Baseline data from 314 participants in the Colpopexy And Urinary Reduction Efforts (CARE) trial were analyzed. Pelvic symptoms and impact were assessed using the Pelvic Floor Distress Inventory (PFDI) and the Pelvic Floor Impact Questionnaire (PFIQ). PFDI and PFIQ scores were compared by prolapse stage and history of incontinence or POP surgery. Regression analyses were performed to identify other predictors of symptoms and impact. RESULTS: Women were predominantly (90%) Caucasian and had mean age of 61 years. Women with stage II POP, especially those with prior surgery, reported more symptoms and impact than women with more advanced POP. There were no other significant predictors of symptoms or life impact. CONCLUSIONS: Women planning sacrocolpopexy with stage II prolapse and prior pelvic surgery reported more symptoms and quality of life impact than those with more advanced prolapse.

Interim clinical outcomes in the Collaborative Initial Glaucoma Treatment Study comparing initial treatment randomized to medications or surgery.

PURPOSE: To report interim outcome data, using all available follow-up through 5 years after treatment initiation, in the Collaborative Initial Glaucoma Treatment Study (CIGTS). DESIGN: Randomized clinical trial. PARTICIPANTS: Six hundred seven newly diagnosed glaucoma patients. METHODS: In a randomized clinical trial, 607 patients with newly diagnosed open-angle glaucoma were initially treated with either medication or trabeculectomy (with or without 5-fluorouracil). After treatment onset and early follow-up, patients were evaluated clinically at 6-month intervals. In addition, quality of life telephone interviews were conducted at similar frequency to the clinical visits. Patients in both arms of CIGTS were treated aggressively in an effort to reduce intraocular pressure (IOP) to a level at or below a predetermined target pressure specific for each individual eye. Visual field (VF) scores were analyzed by time-specific comparisons and by repeated measures models. MAIN OUTCOME MEASURES: VF loss was the primary outcome variable in CIGTS. Secondary outcomes of visual acuity (VA), IOP, and cataract were also studied. RESULTS: On the basis of completed follow-up through 4 years and partially completed through 5 years, VF loss did not differ significantly by initial treatment. Over the entire period of follow-up, surgical patients had a greater risk of substantial VA loss compared with medical patients. However, by 4 years after treatment, the average VA in the two groups was about equal. Over the course of follow-up, IOP in the medicine group has averaged 17 to 18 mmHg, whereas that in the surgery group averaged 14 to 15 mmHg. The rate of cataract requiring removal was greater in the surgically treated group. CONCLUSIONS: Both initial medical or initial surgical therapy result in about the same VF outcome after up to 5 years of follow-up. VA loss was greater in the surgery group, but the differences between groups seem to be converging as follow-up continues. When aggressive treatment aimed at substantial reduction in IOP from baseline is used, loss of VF can be seen to be minimal in general. Because 4 to 5 years of follow-up in a chronic disease is not adequate to draw treatment conclusions, these interim CIGTS outcomes do not support altering current treatment approaches to open-angle glaucoma.

The Collaborative Initial Glaucoma Treatment Study: interim quality of life findings after initial medical or surgical treatment of glaucoma.

OBJECTIVE: To present interim quality of life (QOL) findings in the Collaborative Initial Glaucoma Treatment Study (CIGTS) using all available follow-up through 5 years from treatment initiation. DESIGN: Randomized controlled clinical trial. PARTICIPANTS: Six hundred seven newly diagnosed patients with open-angle glaucoma from 14 clinical centers. INTERVENTION: Patients were randomly assigned to either initial medical therapy or initial trabeculectomy. After treatment initiation and early follow-up, patients received clinical and QOL evaluations at 6-month intervals. QOL assessments were administered by telephone at a centralized interviewing center. MAIN OUTCOME MEASURES: The CIGTS collected comprehensive QOL information that included both generic and vision-specific QOL measures. This article focuses on initial treatment group differences related to symptom reporting, as measured by a Symptom and Health Problem Checklist, and changes in daily visual functioning, as measured by the Visual Activities Questionnaire (VAQ). RESULTS: Across both treatment groups, there was an overall decline in the percent of participants reporting symptoms over time. Of 43 possible symptoms, 12 symptoms were reported with greater frequency by the surgically treated group and 7 symptoms more frequently by the medically-treated group. The surgical patients reported more total Symptom Impact Glaucoma (P = 0.005) and, in particular, more bother related to local eye symptoms. Very few treatment group differences were noted in visual functioning, although surgical patients reported more problems with activities related to their visual acuity (P = 0.024). The percentage of patients across treatment groups reporting worry about blindness was 50% at baseline but declined to approximately 25% over time. CONCLUSIONS: Overall, the QOL impact reported by the two treatment groups as measured by instruments used in this study is remarkably similar, with relatively few significant study group differences observed after up to 5 years of follow-up in the CIGTS. When significant differences in visual function have been detected using the VAQ, they are consistent with the clinical outcomes. To date, the most persistent QOL finding is the increased impact of local eye symptoms reported by the surgical group compared with the medical group. Although no changes are recommended in the treatment of newly diagnosed glaucoma patients at the time of this interim report, further follow-up will allow for more definitive answers to the QOL impact of these two treatment approaches.

Correlation of visual field with quality-of-life measures at diagnosis in the Collaborative Initial Glaucoma Treatment Study (CIGTS).

PURPOSE: To examine the relationship between various clinical measures of visual field and patient-reported measures of symptoms and health status in a large cohort of patients with glaucoma at the time of diagnosis. PATIENTS AND METHODS: The 607 patients in the Collaborative Initial Glaucoma Treatment Study received standardized examinations of visual field at enrollment. In addition, they completed a telephone-administered, health-related quality-of-life questionnaire, which included the Visual Activities Questionnaire (VAQ) and a symptom and health problem checklist. RESULTS: The Visual Activities Questionnaire total and subscale scores, particularly the peripheral vision subscale, correlated weakly but significantly with global visual field scores. Symptoms attributed to glaucoma also correlated weakly but significantly to visual field scores. Correlations with other visual field measures, including only central and pericentral test locations in the scores, did not strengthen the association, and simulating binocular visual field scores produced only slightly stronger correlations. CONCLUSIONS: At diagnosis, most patients were relatively free of glaucoma-related impairments. Various visual field measures derived from clinical visual field test data were only modestly associated with patients' perceptions of health-related quality of life. As the Collaborative Initial Glaucoma Treatment Study population is followed up longitudinally, it will be important to see whether these pertinent associations become stronger.

Factors influencing quality of life in older women with heart disease.

BACKGROUND: Better understanding of factors influencing the quality of life (QOL) of cardiac patients can guide treatment decisions. OBJECTIVES: To describe the impact of clinical and psychosocial factors on the QOL of older women with heart disease. RESEARCH DESIGN: Baseline and 12-month data from women participating in an intervention study. SUBJECTS: Eligible participants, identified from medical records, were female, > or = 60 years of age, and diagnosed with cardiac disease. A volunteer sample of 570 women (87% white) completed baseline interviews, with 485 women completing the 12-month assessment. MEASURES: Utilizing Wilson and Cleary's conceptual framework (1995), measures of clinical, psychosocial, and functional status were examined for their associations with QOL. RESULTS: At baseline, General Health Perceptions and Symptom Status accounted for 38% and 26%, respectively, of the variation in the QOL rating. Using logistic regression models, seven measures were significant predictors (P < 0.05) of maintenance/improvement versus decline in QOL over 12 months: baseline QOL rating; baseline value and change in satisfaction with social activities over 12 months; change in satisfaction with physical activities; change in satisfaction with mental activities; and baseline value and change in perceived stress. For women who maintained or improved their satisfaction with social activities, the odds for also maintaining or improving QOL were 4.5 times the odds for women whose satisfaction with social activities deteriorated. CONCLUSIONS: Satisfaction with social activities and perceived stress are important predictors of subsequent QOL. Consideration of the impact of treatments on these factors may help to prevent deterioration of QOL among older female cardiac patients.

Quality of life in newly diagnosed glaucoma patients : The Collaborative Initial Glaucoma Treatment Study.

OBJECTIVE: The Collaborative Initial Glaucoma Treatment Study (CIGTS) was designed to determine whether patients with newly diagnosed open-angle glaucoma are better treated initially by medicine or immediate filtering surgery. This paper describes the quality-of-life (QOL) measurement approach, instruments included, and the CIGTS participants' QOL findings at the time of diagnosis. DESIGN: Baseline results from a randomized, controlled clinical trial. PARTICIPANTS: Six hundred seven patients from 14 clinical centers were enrolled. INTERVENTION: Patients randomized to initial medication received a stepped medical regimen (n = 307). Those randomized to initial surgery underwent a trabeculectomy (n = 300). The baseline interview was conducted before treatment initiation. All baseline and posttreatment QOL assessments were conducted by telephone from a centralized interviewing center. MAIN OUTCOME MEASURES: The primary outcome measure described in this paper was QOL. The QOL instrument is multidimensional and incorporates both disease-specific and generic measures, including the Visual Activities Questionnaire, Sickness Impact Profile, and a Symptom and Health Problem CHECKLIST: RESULTS: The correlations between QOL measures and clinical outcomes were in the expected direction, but relatively weak. At initial diagnosis, difficulty with bright lights and with light and dark adaptation were the most frequently reported symptoms related to visual function, whereas visual distortion was the most bothersome. Approximately half of the patients reported at least some worry or concern about the possibility of blindness. Within the Visual Activities Questionnaire, higher scores on the Peripheral Vision subscale were associated with more field loss (P < 0.01). In regression analyses controlling for sociodemographics and nonocular comorbidities, increased visual field loss was significantly associated with higher dysfunction among five disease-specific QOL measures (P < 0.05). CONCLUSIONS: Newly diagnosed glaucoma patients reported experiencing some visual function symptoms at the time of diagnosis that would not be intuitively expected based on clinical testing. Some discussion about the association between clinical presentation and worry about blindness may reduce unnecessary concern. These results provide the basis for long-term comparisons of the QOL effects of initial medical and surgical treatment for open-angle glaucoma.

Gender differences in the associations of self esteem, stress and social support with functional health status among older adults with heart disease.

This study explored and compared the role of self esteem, stress and social support in maintenance or improvement in physical and psychosocial functioning over 12 months in older men and women with cardiovascular disease. Data from 502 adults over 60 years of age showed that self esteem and stress were both significantly associated with functioning when demographic and clinical factors were controlled. Men were significantly more likely than women to maintain or improve in functioning. Self esteem, stress, compliance with medication regimens, and marital status were significantly associated with maintenance or improvement of functioning among women. Only age and stress were significantly associated with maintenance or improvement in functioning among men. Findings indicated that: (1) stress and self esteem were stronger predictors of functioning, especially among women, than demographic and clinical factors; and (2) women in the highest quartile of the self esteem distribution were approximately five times as likely to maintain or improve their functioning as women in the lowest quartile.

Changes in functional health status of older women with heart disease: evaluation of a program based on self-regulation.

OBJECTIVES: This study involving 570 women aged 60 years or older with heart disease, assessed the effects of a disease management program on physical functioning, symptom experience, and psychosocial status. METHODS: Women were randomly assigned to control or program groups. Six to eight women met weekly with a health educator and peer leader over 4 weeks to learn self-regulation skills with physical activity as the focus. Evaluative data were collected through telephone interviews, physical assessments, and medical records at baseline and 4 and 12 months post baseline. RESULTS: At 12 months, compared with controls, program women were less symptomatic (p < .01), scored better on the physical dimension of the Sickness Impact Profile (SIP; p < 0.05), had improved ambulation as measured by the 6-minute walk (p < 0.01), and lost more body weight (p < .001). No differences related to psychosocial factors as measured by the SIP were noted. CONCLUSION: A self-regulation-based program that was provided to older women with heart disease and that focused on physical activity and disease management problems salient to them, improved their physical functioning and symptom experience. Psychosocial benefit was not evident and may be a result of measurement error or due to insufficient program time spent on psychosocial aspects of functioning.

Diabetes and pregnancy. Preconception care, pregnancy outcomes, resource utilization and costs.

OBJECTIVE: To describe and compare pregnancy outcomes, resource utilization and costs among women with diabetes who receive and do not receive preconception care. STUDY DESIGN: A multicenter, prospective, observational study of women with type 1 diabetes who received preconception care (PC), became pregnant and delivered (PC women) and women with type 1 diabetes who received prenatal care (PC) only and delivered (PN women). RESULTS: As compared to PN women (n = 74), PC women (n = 24) were seen earlier in gestation and had significantly lower glycosylated hemoglobin levels. The combined number of outpatient visits for PC women was not greater than for PN women. PC women were hospitalized significantly less during pregnancy and tended to have shorter inpatient stays. The mean length of stay after delivery was significantly shorter for PC women. Intensity of care tended to be lower and length of stay shorter for infants of mothers who received PC care. The net cost saving associated with PC care was approximately $34,000 per patient. CONCLUSION: PC achieves its major intended health benefits and is associated with reduced resource utilization and substantially reduced costs. For both health and economic reasons, clinical practice and public policy should embrace PC.

The impact of a disease-management program on the symptom experience of older women with heart disease.

This study describes the symptom experience of 570 older women with heart disease and evaluates a disease-management program's impact on symptoms over time. Women were randomly assigned to either usual care or a 4-week program ("Women take PRIDE") designed to improve self-regulation skills by focusing on increasing physical activity. At 4 months follow-up, program women, compared to controls, reported fewer total symptoms (p = 0.01) and decreased symptom frequency (p = 0.02) and bothersomeness (p = 0.02). By 12 months, positive intervention effects emerged within the common cardiac and sleep and rest symptom categories. Program group women reported more improvements in symptoms likely to be affected by increasing physical activity at both follow-ups (p < 0.05).

Identifying the content area for the 51-item National Eye Institute Visual Function Questionnaire: results from focus groups with visually impaired persons.

OBJECTIVE: To identify the content area for a questionnaire designed to measure vision-targeted health-related quality of life and to determine whether problems with vision-related functioning are qualitatively similar across different common eye diseases. DESIGN: Twenty-six condition-specific focus groups were conducted with 246 patients from 5 geographic regions to identify the content area for a questionnaire for use among persons with diabetic retinopathy, glaucoma, macular degeneration, cytomegalovirus retinitis, and cataract. A standard protocol was used to structure each focus group discussion. Sessions were audiotaped, transcribed, and coded in preparation for a content analysis. SETTINGS: Five university-based ophthalmology practices and 1 nonprofit eye care foundation. PARTICIPANTS: Eligible participants had to have 1 of the following eye conditions: age-related cataracts, age-related macular degeneration, diabetic retinopathy, primary open angle glaucoma, cytomegalovirus retinitis, or low vision from any cause. All eligible persons were older than 21 years, spoke English, and had sufficient cognitive function to provide informed consent. RESULTS: Among the 246 participants, 2623 problems with vision-related functioning were mentioned. The mean number of problems per person ranged from 13.5 for those with diabetic retinopathy to 7.9 for persons with glaucoma. For the sample overall, reading problems were mentioned most frequently, followed by driving, general problems with seeing clearly, and mental health complaints caused by vision. Although the proportion of persons who reported each problem varied by condition, at least some persons with each eye disease reported each problem. The 3 most common descriptors associated with each problem were difficulty or ease of performance (13%), psychological distress associated with performance of the activity (11%), and complete inability to participate in a visual activity (11%). CONCLUSION: An item-generation strategy for a new questionnaire using a standardized focus group method identified content areas and aspects of visual disability that are not included in currently available vision-specific instruments that assess the impact of common eye diseases on visual functioning in every-day life. Although participants mentioned problems that were unique to their disease, across conditions the problems mentioned were similar. These findings provide empirical evidence of content validity for a vision-targeted, health-related quality-of-life survey designed for use across conditions.

A two-step intervention of increase mammography among women aged 65 and older.

OBJECTIVES: This study evaluated a two-step intervention for mammography screening among older women. METHODS: Four hundred and sixty women, identified from physician practices, were randomized to a control or a two-step intervention (physician letter and peer counseling call) group. Women in the intervention group who obtained a mammogram received a grocery coupon. RESULTS: Over the 12 months of the study, more women in the intervention group than in the control group obtained mammograms (38% vs 16%). The most dramatic difference was in the higher odds that women in the intervention group would obtain a mammogram within 2 months (odds ratio = 10.5). CONCLUSIONS: The intervention significantly increased screening mammography. Future efforts must be multifaceted and incorporate the unique concerns of older women.

Preventing the spread of AIDS in youth: principles of practice from 11 diverse projects.

PURPOSE: The purpose of this study was to identify the factors that contributed to intervention effectiveness in acquired immunodeficiency syndrome (AIDS) prevention projects targeting youth. METHODS: Eleven AIDS prevention projects funded by the Robert Wood Johnson Foundation whose target populations consisted of at least 60% youth were studied. A blended methodology resulted in quantitative data (i.e., survey responses) from all 11 projects supplemented with qualitative data (i.e., open-ended interviews) drawn from in-depth site visits to six projects. RESULTS: Projects reported using a mean of 16.6 intervention activities (selected from a list of 30). Six activities were used by all 11 projects. Small group discussions were rated as one of three most effective activities by 72.7% of the projects that used them. Project staff identified three elements of effective interventions: involvement of peer educators, recognition of the role of adults (e.g., parents, teachers), and use of structured settings to gain access to the target population (e.g., schools, clubs). CONCLUSIONS: The most powerful strategies described by project staff for reaching adolescents at risk for human immunodeficiency virus (HIV) transmission also bring considerable challenges. Opportunity costs associated with using peer educators, gatekeeper support, and structured settings may include limited control of the message, impaired credibility, and failure to reach those youth at greatest risk of HIV infection, respectively. Health educators will do well to consider the advantages and disadvantages of these factors when developing, implementing, and evaluating AIDS prevention programs for youth.

Assessment of health-related quality of life after corneal transplantation.

PURPOSE: To determine the extent to which commonly used clinical measures of corneal transplantation outcome are related to aspects of visual function and health-related quality of life. METHODS: In a cross-sectional validation study, ophthalmic examination information was collected by chart review of, and health-related quality of life information was collected by telephone contact with, patients (n = 77) undergoing routine follow-up examinations at least 1 year after corneal transplantation. A questionnaire that included the VF-14 and SF-36 instruments was completed for each participant. Associations between clinical and questionnaire outcomes were evaluated using analysis of variance and regression analyses. RESULTS: When the best-corrected visual acuity of both eyes was evaluated, there was a positive association (P < .0001) of visual acuity with the VF-14 score and with the following SF-36 scales: role limitations because of emotional problems (P = .04), emotional well-being (P = .08), and social functioning (P = .02). Those with a high degree of keratometric astigmatism showed an impact on social functioning (P = .005). Upon regression analysis, the single most important factor associated with the patients' reported visual function was their visual acuity in the better eye, followed by the extent of keratometric astigmatism. CONCLUSIONS: These findings demonstrate a high degree of criterion validity in using the VF-14 instrument to assess the outcome of corneal transplantation. Application of the more generic SF-36 measure shows effects of visual disability on other aspects of corneal transplant patients' health status, including their emotional and social functioning.

Evaluation of factors potentially associated with inadequate follow-up of mammographic abnormalities.

BACKGROUND: To increase the proportion of women who receive the recommended follow-up for mammographic abnormalities, factors which inhibit follow-up must be identified. Patient and health care delivery related factors were evaluated, stratified by type of follow-up recommendation, to determine reasons for inadequate follow-up. METHODS: All Caucasian and African American women at the Henry Ford Medical Group, in southeastern Michigan, with an abnormal screening mammogram result between January 1, 1992 and July 31, 1992 were identified. All women with inadequate follow-up, and a random sample of women with adequate follow-up, were invited to participate in a telephone interview that assessed three major dimensions of the Health Belief Model (susceptibility, benefits, and barriers), general health and health behaviors, and related characteristics. The relationship between these factors and inadequate follow-up was evaluated separately for women with immediate and 6-month follow-up recommendations, using univariate and multivariate analyses. RESULTS: A total of 555 women were invited to participate in the study (219 with inadequate follow-up and 336 with adequate follow-up). Interviews were completed for 418 women (75.3%). Women who were not notified of their mammographic abnormality were excluded from this study, leaving 399 women available for analysis. Among the women who had the recommended immediate follow-up, those who reported difficulty in obtaining medical appointments were 4 times more likely to have inadequate follow-up (95% confidence interval [CI] 1.5, 11.3), after adjusting for other variables. Among the women with six-month follow-up recommended, those who received fewer mammograms in the past 5 years were more likely to have inadequate follow-up (odds ratio [OR] = 4.0; 95% CI 1.6, 10.4). In this group, sociodemographic characteristics were not associated with inadequate follow-up, although women with transportation problems were at a higher risk (crude OR = 5.2; 95% CI 1.6, 16.7; adjusted OR = 3. 1; 95% CI 0.5, 18.3). Among women with 6-month follow-up recommended, those who perceived their health as poor or fair (crude OR = 2.4; 95% CI 1.2, 5.1; adjusted OR = 2.3; 95% CI 0.8, 6.8) and those who did not examine their own breasts frequently (crude OR = 2.3; 95% CI 1.0, 5.4; adjusted OR = 2.7; 95% CI 0.5, 18.3) were also more likely to have inadequate follow-up. CONCLUSIONS: Results from this study demonstrate that the relative importance of factors associated with inadequate follow-up of abnormal mammograms differs according to the type of follow-up recommended. For both types of recommendations, the factors identified are noteworthy because they are amenable to intervention. Efforts should be made to facilitate appointment scheduling for follow-up of abnormal mammograms, and information about previous mammography screening should be obtained to identify women who are at a high risk for inadequate follow-up.

Evaluation of 37 AIDS prevention projects: successful approaches and barriers to program effectiveness.

In 1988, the Robert Wood Johnson Foundation awarded grants to 54 AIDS prevention and service projects. This article presents the results from a survey of the 37 projects that contained a substantial prevention effort and embellishes these findings with qualitative data from in-depth site visits to 12 projects. Survey respondents reported conducting a mean of 19 different intervention activities. Small-group discussion, outreach to populations engaged in high-risk behaviors, and training peers and volunteers were the intervention activities rated most effective by project staff. Qualitative analysis identified eight factors facilitating intervention effectiveness. Three site-visited projects were chosen to exemplify the ways in which these facilitating factors contributed to the perceived effectiveness of small-group discussions, outreach, and the training of peer educators. Recommendations to guide the development and delivery of future community-based AIDS prevention projects are presented.

Staff stress in AIDS prevention and service organizations: implications for health education practice.

The purpose of this study was to identify the frequency of staff stressors and their association with programmatic factors in 51 AIDS prevention and service projects funded by the Robert Wood Johnson Foundation. The methodology included both quantitative (i.e. closed-ended survey questions) and qualitative (i.e. in-depth, open-ended interviews) data to identify the important sources of staff stress. The findings suggest that staff working in AIDS prevention and service projects perceive significant levels of stress regardless of project focus. The most frequently reported staff stresses were too much work, rapid organizational growth, burnout, and problems with staff retention and communication. Among the issues rarely reported as a source of staff stress were too little work, discomfort with the target population and personal health risk concerns. The programmatic factor most often associated with staff stress was obtaining additional funding. Health education interventions need to take a comprehensive approach that includes altering the psychosocial-environmental conditions that give rise to stressors and strengthening the individual and organizational factors that may modify the effects of stress on the AIDS workforce.

Diabetes and pregnancy. Factors associated with seeking pre-conception care.

OBJECTIVE: To define sociodemographic characteristics, medical factors, knowledge, attitudes, and health-related behaviors that distinguish women with established diabetes who seek pre-conception care from those who seek care only after conception. RESEARCH DESIGN AND METHODS: A multicenter, case-control study of women with established diabetes making their first pre-conception visit (n = 57) or first prenatal visit without having received pre-conception care (n = 97). RESULTS: Pre-conception subjects were significantly more likely to be married (93 vs. 51%), living with their partners (93 vs. 60%), and employed (78 vs. 41%); to have higher levels of education (73% beyond high school vs. 41%) and income (86% > $20,000 vs. 60%); and to have insulin-dependent diabetes mellitus (IDDM) (93 vs. 81%). Pre-conception subjects with IDDM were more likely to have discussed pre-conception care with their health care providers (98 vs. 51%) and to have been encouraged to get it (77 vs. 43%). In the prenatal group, only 24% of pregnancies were planned. Pre-conception patients were more knowledgeable about diabetes, perceived greater benefits of pre-conception care, and received more instrumental support. CONCLUSIONS: Only about one-third of women with established diabetes receive pre-conception care. Interventions must address prevention of unintended pregnancy. Providers must regard every visit with a diabetic woman as a pre-conception visit. Contraception must be explicitly discussed, and pregnancies should be planned. In counseling, the benefits of pre-conception care should be stressed and the support of families and friends should be elicited.