Community Engagement in Health-Related Research: A Case Study of a Community-Linked Research Infrastructure, Jefferson County, Arkansas, 2011-2013.

BACKGROUND: Underrepresentation of racial minorities in research contributes to health inequities. Important factors contributing to low levels of research participation include limited access to health care and research opportunities, lack of perceived relevance, power differences, participant burden, and absence of trust. We describe an enhanced model of community engagement in which we developed a community-linked research infrastructure to involve minorities in research both as participants and as partners engaged in issue selection, study design, and implementation. COMMUNITY CONTEXT: We implemented this effort in Jefferson County, Arkansas, which has a predominantly black population, bears a disproportionate burden of chronic disease, and has death rates above state and national averages. METHODS: Building on existing community-academic partnerships, we engaged new partners and adapted a successful community health worker model to connect community residents to services and relevant research. We formed a community advisory board, a research collaborative, a health registry, and a resource directory. OUTCOME: Newly formed community-academic partnerships resulted in many joint grant submissions and new projects. Community health workers contacted 2,665 black and 913 white community residents from December 2011 through April 2013. Eighty-five percent of blacks and 88% of whites were willing to be re-contacted about research of potential interest. Implementation challenges were addressed by balancing the needs of science with community needs and priorities. INTERPRETATION: Our experience indicates investments in community-linked research infrastructure can be fruitful and should be considered by academic health centers when assessing institutional research infrastructure needs.

Motivational interviewing improves weight loss in women with type 2 diabetes.

OBJECTIVE: We sought to determine whether adding motivational interviewing to a behavioral weight control program improves weight loss outcomes and glycemic control for overweight women with type 2 diabetes. RESEARCH DESIGN AND METHODS: We conducted a randomized, controlled, clinical trial in which participants all received an 18-month, group-based behavioral obesity treatment and were randomized to individual sessions of motivational interviewing or attention control (total of five sessions) as an adjunct to the weight control program. Overweight women with type 2 diabetes treated by oral medications who could walk for exercise were eligible. Primary outcomes were weight and A1C, assessed at 0, 6, 12, and 18 months. RESULTS: A total of 217 overweight women (38% African American) were randomized (93% retention rate). Women in motivational interviewing lost significantly more weight at 6 months (P = 0.01) and 18 months (P = 0.04). Increased weight losses with motivational interviewing were mediated by enhanced adherence to the behavioral weight control program. African-American women lost less weight than white women overall and appeared to have a diminished benefit from the addition of motivational interviewing. Significantly greater A1C reductions were observed in those undergoing motivational interviewing at 6 months (P = 0.02) but not at 18 months. CONCLUSIONS: Motivational interviewing can be a beneficial adjunct to behavioral obesity treatment for women with type 2 diabetes, although the benefits may not be sustained among African-American women.

Patient smoking cessation advice by health care providers: the role of ethnicity, socioeconomic status, and health.

OBJECTIVES: We assessed differences by ethnicity in ever receiving advice from providers to quit smoking. We evaluated whether socioeconomic status and health status were moderators of the association. METHODS: We used 2000 Behavioral Risk Factor Surveillance Survey data, a population-based cross-sectional survey. RESULTS: After adjusting for complex survey design, 69% of the 14089 current smokers reported ever being advised to quit by a provider. Hispanics (50%) and African Americans (61%) reported receiving smoking counseling less frequently compared with Whites (72%, P<.01 for each). Ethnic minority status, lower education, and poorer health status remained significantly associated with lower rates of advice to quit after adjustment for number of cigarettes, time from last provider visit, income, comorbidities, health insurance, gender, and age. Smoking counseling differences between African Americans and Whites were greater among those with lower income and those without health insurance. Compared with Whites, differences for both Hispanics and African Americans were also greater among those with lower education. CONCLUSION: We found lower rates of smoking cessation advice among ethnic minorities. However, we also found complex interactions of ethnicity with socioeconomic factors.

Effect of folic acid fortification of foods on folate intake in female smokers with cervical dysplasia.

OBJECTIVE: We investigated the effect of folic acid fortification of enriched cereal grains on folate intake in women of predominantly childbearing age at high risk for cervical cancer. METHODS: Subjects in this cross-sectional study were 77 women randomized between November 1999 and December 2000 in the Women's Intervention to Stay Healthy (WISH), a clinical trial evaluating the effect of a tobacco control intervention on the progression of cervical dysplasia. All subjects were cigarette smokers, had a previously abnormal Papanicolaou test, and were positive for high-risk human papillomavirus at entry. Dietary intake was assessed with food-frequency questionnaires completed at the baseline visit for WISH. The effect of folic acid fortification on folate intake was assessed by using pre- and postfortification folate databases to estimate folate intake. RESULTS: Mean folate intake assessed with the postfortification database was 63% higher than intake assessed with the prefortification database: 417 versus 256 microg/d of dietary folate equivalents (P < 0.0001). The proportion of subjects below the estimated average requirement for folate was smaller after fortification than before fortification: 40.3% versus 75.3% (P < 0.0001). Several foods, including white bread, cheese dishes, spaghetti, and rice, became major sources of folate as a result of fortification. CONCLUSIONS: Folic acid fortification resulted in an increased intake of folate in these subjects. However, even with fortification, folate intake in a large proportion of these women remained below recommended levels. These results should be considered before decisions regarding future levels of folic acid fortification are made.

The impact of a family history of breast cancer on screening practices and attitudes in low-income, rural, African American women.

BACKGROUND: Women with a family history of breast cancer are at increased risk for developing cancer and, therefore, might be expected to engage in early detection practices more actively than women without a family history. Alternatively, women with a family history may avoid thinking about cancer and have attitudes and practices that do not promote early detection. METHODS: This study examined breast cancer attitudes and practices among African American women aged >or=50 who had not had a mammogram in the last 2 years. RESULTS: Phone survey data from 320 female clients of low-income, rural primary care clinics (91% African American) indicated that 15% self-reported a family history of breast cancer (FH(+)). Half of the FH(+) women did not know their relative risk of developing breast cancer. Of those providing a risk estimate, 67% perceived themselves at low risk compared with other women their age. Perceived relative risk was comparable between FH(+) and FH(-) women. Further, FH(+) women did not indicate greater worry about breast cancer, nor did they have more accurate knowledge of mammography recommendations than FH(-) women. Two thirds of FH(+) women had never had a mammogram. Monthly breast self-examination did not differ between FH(+) and FH(-) women. CONCLUSIONS: Thus, neither knowledge of a positive family history nor perceived relative risk of breast cancer was associated with either increased or decreased early detection practices among these low-income, rural, African American women who have underused mammography. Furthermore, a substantial proportion of FH(+) women had not ever participated in screening mammography. Interventions to increase mammography rates in this population of underusers are indicated.

The relationship of perceived self-efficacy to quality of life in chronic obstructive pulmonary disease.

From a biomedical perspective, variations in the quality of life of chronic obstructive pulmonary disease (COPD) patients may be attributed to changes in pulmonary function; thus, an increase in lung function should be correlated with an increased score on a health-related quality-of-life measure. However, inconsistent results regarding correlations between various measures of pulmonary function and quality of life have been reported in the literature. The authors evaluated a social cognitive model of quality of life among persons with COPD by analyzing relationships among biomedical measures, self-efficacy measures, and quality-of-life measures in a recursive path model. Path analysis results indicated that the association of pulmonary function and symptoms with quality of life was mediated by perceived self-efficacy for functional activities.

Treatment preferences in recurrent ovarian cancer.

OBJECTIVES: In the case of recurrent ovarian cancer, salvage therapy represents the potential to trade off between quality and quantity of life. Patient and physician face a choice between chemotherapy directed at slowing disease progression and supportive or palliative care that focuses on symptom management. To date, no studies have investigated the effects of best supportive care on ovarian cancer patients' quality of life and length of life as compared to salvage therapy. In other cancers, both quantity and quality of life considerations have been shown to affect treatment preferences. METHODS: Using a decision board, we assessed preferences for salvage therapy or palliative care in the case of recurrent ovarian cancer among 81 ovarian cancer patients receiving first-line chemotherapy and 75 Noncancer Controls. RESULTS: Compared to Noncancer Controls, ovarian cancer patients overwhelmingly preferred salvage therapy; quantity of life was of primary importance. In both groups, preference was not related to age, marital status, number of children, or employment status. On average, patients indicated they would switch from salvage therapy to palliative care when the median survival associated with salvage therapy was reduced to 5 months. Noncancer Controls would switch significantly sooner, when the median increment in survival period was reduced to 8 months. Switchpoint was not associated with life satisfaction, quality of life, or psychological or spiritual well-being in either group. CONCLUSIONS: The majority of women, independent of a cancer diagnosis, indicated a desire for continuing aggressive treatment, despite poor outcomes. Quality of life was of secondary importance, especially among ovarian cancer patients.

Lessons learned from the Uniontown Community Health Project.

OBJECTIVE: To compile lessons learned from the Uniontown Community Health Project. METHODS: Lessons-learned information was gathered from project staff and community volunteers. RESULTS: Analysis led to the identification of 6 lessons: (a) Establish personal working relationships in communities; (b) find a local community coordinator to lead efforts; (c) be patient in implementing a community health advisor (CHA) model; (d) be flexible and emphasize simplicity when implementing community activities; (e) recognize that meeting research goals requires compromise; and (f) plan transfer of project activities to the community from the beginning. CONCLUSION: These lessons may benefit others implementing CHA programs.

Relationship Between Relative Risk of Developing Breast Cancer and Absolute Risk in a Population of Rural, Older African American Women.

Relative risks computed from known breast cancer risk factors can be used to quantitate a woman's individual risk of developing breast cancer. However, among older women the absolute risk of developing breast cancer over a specified time interval may be more useful in risk-benefit counseling. The objective of this investigation is to characterize the relationships between relative risks and absolute risks of breast cancer among a population of rural, older African American women. Among 224 African American women aged 50-91 years, relative risks were computed from historical information on age at menarche, number of previous biopsies, age at first birth, and number of first-degree relatives with breast cancer. These estimates, combined with the woman's current age, average remaining life expectancy, age-specific mortality, and breast cancer incidence rates, were used to estimate lifetime probabilities of developing breast cancer. Most women in the cohort (72.8%) had weak relative risks of 1.01-1.5 and only 3.5% of the women had relative risks of greater than 3.0. The majority of the women (87.5%) had lifetime probabilities of developing breast cancer that were less than 5%. Although there is a marked increase in age-specific breast cancer incidence with age, the probability of developing breast cancer in this population is low, primarily due to the low relative risks and the effects of competing mortality at older ages. Screening mammography should be directed toward women with high risks who are not receiving regular screening mammograms.