Community-engaged research in vascular surgery: An approach to decrease amputation disparities and effect population-level change.

Community-engaged research (CEnR) is a powerful tool to create sustainable and effective change in health outcomes. CEnR engages community members as equal partners, amplifying their voices and priorities by including them throughout the research process. Such engagement increases the relevance and meaning of research, improves the translation of research findings into sustainable health policy and practice, and ultimately enhances mutual trust among academic, clinical, and community partners for ongoing research partnership. There are a number of key principles that must be considered in the planning, design, and implementation of CEnR. These principles are focused on inclusive representation and participation, community empowerment, building community capacity, and protecting community self-determination. Although vascular surgeons may not be equipped to address these issues from the ground up by themselves, they should work with a team who can help them incorporate these elements into their CEnR project designs and proposals. This may be best accomplished by collaborating with researchers and community-based organizations who already have this expertise and have established social capital within the community. This article describes the theory and principles of CEnR, its relevance to vascular surgeons, researchers, and patients, and how using CEnR principles in vascular surgery practice, research, and outreach can benefit our patient population, with a specific focus on reducing disparities related to amputation.

Readmission drivers for children with medical complexity: Home nursing shortages cause health crises.

OBJECTIVE: Children with medical technology dependence (MTD) are frequently readmitted to the hospital. However, due to their medical fragility, it is often difficult to untangle the root causes for readmissions to identify the most effective preventive approaches. We sought to explore environmental and family factors driving hospital readmissions for children with MTD. DESIGN: Semi-structured, in-person interviews were conducted with state-wide care coordinators for children with MTD in Illinois with at least 1 year of experience. Interview topics related to children with MTD transitioning from hospital-to-home, essential supports for living in the community, and factors which influenced and prevented hospital readmission. The interview guide served as an initial codebook which was iteratively modified as themes emerged. RESULTS: Fifteen care coordinators with on average 6.6 years of experience were interviewed. They described that lack of home nursing was one of the primary drivers of readmissions due to parental exhaustion and lack of medical expertize in the home. Unavoidable medical admissions, a lack of a plan for emergencies, and home environmental factors also contributed to readmissions. CONCLUSION: Hospital readmission is an expected occurrence for children with MTD, yet still may be substantially reduced through consistent, quality home health nursing to bolster family capacity and allow for respite from constant caregiving. Improved incentives for the home health workforce to increase manpower would be ultimately offset by reduced hospitalizations for children with MTD. Additionally, more research is needed to understand which home nursing structures and skills optimally support families in the reality of manpower scarcity.

Potential Unintended Consequences Of Recent Shared Decision Making Policy Initiatives.

Shared decision making (SDM)-when clinicians and patients make medical decisions together-is moving swiftly from an ethical ideal toward widespread clinical implementation affecting millions of patients through recent policy initiatives. We argue that policy initiatives to promote SDM implementation in clinical practice carry the risk of several unintended negative consequences if limitations in defining and measuring SDM are not addressed. We urge policy makers to include prespecified definitions of desired outcomes, offer guidance on the tools used to measure SDM in the multitude of contexts in which it occurs, evaluate the impact of SDM policy initiatives over time, review that impact at regular intervals, and revise SDM measurement tools as needed.

Racial disparities in the choice of definitive treatment for squamous cell carcinoma of the oral cavity.

BACKGROUND: Definitive surgery is recommended for oral cavity squamous cell carcinoma (SCC). The purpose of this study was to present our assessment of the disparities in treatment selection for oral cavity SCC. METHODS: Non-Hispanic white and non-Hispanic black patients with oral cavity SCC were identified in the National Cancer Database (NCDB). Regression models were used to estimate relative risk (RR) of receiving surgery and absolute difference between non-Hispanic white and non-Hispanic black patients. RESULTS: There were 82.3% of non-Hispanic white patients who received surgery, compared to 64.2% of non-Hispanic black patients (P < .001). The non-Hispanic black patients were less likely to receive surgery than non-Hispanic white patients (RR 0.87) with an absolute difference of 10.9%. The non-Hispanic black patients were significantly more likely to not be offered surgery (RR 1.42) and to refuse recommended surgery (RR 1.38) but not have a contraindication to surgery (RR 1.17). CONCLUSION: The non-Hispanic black patients are less likely to receive or be recommended surgery for oral cavity SCC and are more likely to refuse surgery. Further study is needed to identify strategies to close this disparity.

Reducing Muslim Mammography Disparities: Outcomes From a Religiously Tailored Mosque-Based Intervention.

OBJECTIVE: To describe the design of, and participant-level outcomes related to, a religiously tailored, peer-led group education program aimed at enhancing Muslim women's mammography intention. METHOD: Using a community-engaged approach and mixed methods, we identified and addressed barrier beliefs impeding mammography screening among Muslim American women. Our religiously tailored, mosque-based, peer-led intervention involved facilitated discussions and expert-led didactics conveying health-related religious teachings, and information about the benefits and process of mammography. Barrier beliefs were addressed through reframing, reprioritizing, or reforming such beliefs. Participant surveys were collected preintervention, postintervention, 6 months postintervention, and 1 year postintervention. These measured changes in mammography intention, likelihood, confidence, and resonance with barrier and facilitator beliefs. RESULTS: A total of 58 Muslim women (mean age = 50 years) that had not had a mammogram in the past 2 years participated in the two-session program. Self-reported likelihood of obtaining a mammogram increased significantly ( p = .01) and coincided with a positive trend in confidence ( p = .08). Individuals with higher agreement with barrier beliefs preintervention had lower odds for positive change in likelihood (odds ratio = 0.80, p = .03), while those who were married had higher odds for positive change in likelihood (odds ratio = 37.69, p = .02). At 1-year follow-up, 22 participants had obtained a mammogram. CONCLUSION: Our pilot mosque-based intervention demonstrated efficacy in improving Muslim women's self-reported likelihood of obtaining mammograms, and increased their mammography utilization, with nearly 40% obtaining a mammogram within 12 months of the intervention. IMPACT: Our conceptual model for religiously tailoring messages, along with its implementation curriculum, proved effective in enhancing the likelihood and receipt of mammograms among Muslim American women. Accordingly, our work advances both the theory and practice of faith-based interventions and provides a model for addressing Muslim women's cancer screening disparities.

Developing religiously-tailored health messages for behavioral change: Introducing the reframe, reprioritize, and reform ("3R") model.

RATIONALE: As community health interventions advance from being faith-placed to authentically faith-based, greater discussion is needed about the theory, practice, and ethics of delivering health messages embedded within a religious worldview. While there is much potential to leverage religion to promote health behaviors and improve health outcomes, there is also a risk of co-opting religious teachings for strictly biomedical ends. OBJECTIVE: To describe the development, implementation, and ethical dimensions of a conceptual model for religiously-tailoring health messages. METHOD: We used data from 6 focus groups and 19 interviews with women aged 40 and older sampled from diverse Muslim community organizations to map out how religious beliefs and values impact mammography-related behavioral, normative and control beliefs. These beliefs were further grouped into those that enhance mammography intention (facilitators) and those that impede intention (barriers). In concert with a multi-disciplinary advisory board, and by drawing upon leading theories of health behavior change, we developed the "3R" model for crafting religiously-tailored health messages. RESULTS: The 3R model addresses barrier beliefs, which are beliefs that negatively impact adopting a health behavior, by (i) reframing the belief within a relevant religious worldview, (ii) reprioritizing the belief by introducing another religious belief that has greater resonance with participants, and (iii) reforming the belief by uncovering logical flaws and/or theological misinterpretations. These approaches were used to create messages for a peer-led, mosque-based, educational intervention designed to improve mammography intention among Muslim women. CONCLUSIONS: There are benefits and potential ethical challenges to using religiously tailored messages to promote health behaviors. Our theoretically driven 3R model aids interventionists in crafting messages that address beliefs that hinder healthy behaviors. It is particularly useful in the context of faith-based interventions for it highlights the ethical choices that must be made when incorporating religious values and beliefs in tailored messages.

Religious beliefs and mammography intention: findings from a qualitative study of a diverse group of American Muslim women.

OBJECTIVE: Studies suggest that American Muslim women underutilize mammography. While religion has a strong influence upon Muslim health behaviors, scant research has examined how religion-related beliefs inform Muslim women's intention for mammography. Our study identifies and examines such beliefs. METHODS: Muslim women aged 40 years and older sampled from mosques participated in focus groups and individual interviews. Drawing upon the theory of planned behavior, interviews elicited salient behavioral, normative, and control beliefs regarding mammography and the influence of Islam upon screening intention. RESULTS: Fifty women participated in 6 focus groups and 19 in semistructured interviews, with near-equal numbers of African American, South Asian, and Arab Muslims. Forty-two percent of participants had not had a mammogram within the past 2 years. Across differences in race/ethnicity and mammography status, women voiced four religion-related salient beliefs that inform mammography intention: (1) the perceived duty to care for one's health, (2) religious practices as methods of disease prevention, (3) fatalistic notions about health, and (4) comfort with gender concordant health care. CONCLUSIONS: Religious beliefs influence decisions to pursue mammography across the ethnic/racial diversity of Muslim women. Notions about duty to God and the stewardship of one's body appear to enhance mammography intention. Theocentric notions of cure and illness and varied views regarding personal agency also inform decisional frames that impact mammography intention. Given the salience of religion among our participants, religiously tailored messages in interventions have the potential to enhance cancer screening.

Associations between religion-related factors and breast cancer screening among American Muslims.

American Muslims have low rates of mammography utilization, and research suggests that religious values influence their health-seeking behaviors. We assessed associations between religion-related factors and breast cancer screening in this population. A diverse group of Muslim women were recruited from mosques and Muslim organization sites in Greater Chicago to self-administer a survey incorporating measures of fatalism, religiosity, discrimination, and Islamic modesty. 254 surveys were collected of which 240 met age inclusion criteria (40 years of age or older). Of the 240, 72 respondents were Arab, 71 South Asian, 59 African American, and 38 identified with another ethnicity. 77% of respondents had at least one mammogram in their lifetime, yet 37% had not obtained mammography within the past 2 years. In multivariate models, positive religious coping, and perceived religious discrimination in healthcare were negatively associated with having a mammogram in the past 2 years, while having a PCP was positively associated. Ever having a mammogram was positively associated with increasing age and years of US residency, and knowing someone with breast cancer. Promoting biennial mammography among American Muslims may require addressing ideas about religious coping and combating perceived religious discrimination through tailored interventions.

Associations between religion-related factors and cervical cancer screening among Muslims in greater chicago.

OBJECTIVE: This study aimed to assess rates of Papanicolaou (Pap) testing and associations between religion-related factors and these rates among a racially and ethnically diverse sample of American Muslim women. MATERIALS AND METHODS: A community-based participatory research design was used in partnering with the Council of Islamic Organizations of Greater Chicago to recruit Muslim women attending mosque and community events. These participants self-administered surveys incorporating measures of fatalism, religiosity, perceived discrimination, Islamic modesty, and a marker of Pap test use. RESULTS: A total of 254 survey respondents were collected with nearly equal numbers of Arabs, South Asians, and African American respondents. Of these respondents, 84% had obtained a Pap test in their lifetime, with individuals who interpret disease as a manifestation of God's punishment having a lower odds of having had Pap testing after controlling for sociodemographic factors (odds ratio [OR]=0.87, 95% CI=0.77-1.0). In multivariate models, living in the United States for more than 20 years (OR=4.7, 95% CI=1.4-16) and having a primary care physician (OR=7.7, 95% CI=2.5-23.4) were positive predictors of having had a Pap test. Ethnicity, fatalistic beliefs, perceived discrimination, and modesty levels were not significantly associated with Pap testing rates. CONCLUSIONS: To our knowledge, this is the first study to assess Pap testing behaviors among a diverse sample of American Muslim women and to observe that negative religious coping (e.g., viewing health problems as a punishment from God) is associated with a lower odds of obtaining a Pap test. The relationship between religious coping and cancer screening behaviors deserves further study so that religious values can be appropriately addressed through cancer screening programs.

Culturally tailoring patient education and communication skills training to empower African-Americans with diabetes.

New translational strategies are needed to improve diabetes outcomes among low-income African-Americans. Our goal was to develop/pilot test a patient intervention combining culturally tailored diabetes education with shared decision-making training. This was an observational cohort study. Surveys and clinical data were collected at baseline, program completion, and 3 and 6 months. There were 21 participants; the mean age was 61 years. Eighty-six percent of participants attended >70 % of classes. There were improvements in diabetes self-efficacy, self-care behaviors (i.e., following a "healthful eating plan" (mean score at baseline 3.4 vs. 5.2 at program's end; p = 0.002), self glucose monitoring (mean score at baseline 4.3 vs. 6.2 at program's end; p = 0.04), and foot care (mean score at baseline 4.1 vs. 6.0 at program's end; p = 0.001)), hemoglobin A1c (8.24 at baseline vs. 7.33 at 3-month follow-up, p = 0.02), and HDL cholesterol (51.2 at baseline vs. 61.8 at 6-month follow-up, p = 0.01). Combining tailored education with shared decision-making may be a promising strategy for empowering low-income African-Americans and improving health outcomes.

Compliance and self-reported barriers to follow-up of abnormal screening mammograms among women utilizing a county mobile mammography van.

Our primary objective was to describe the follow-up patterns for abnormal screening mammograms among women in a large urban county who utilized mobile mammography. We conducted a retrospective cohort analysis using electronic records, medical chart review, and questionnaires. Compliance with diagnostic evaluation was 43% to 60%. Among women who did have follow-up, more than 40% did not do so in a timely fashion. Younger women and those with less suspicious mammograms were more likely to have longer delays. We concluded that programs that utilize mobile mammography should include intensive, multilingual tracking systems in order increase diagnostic follow-up for this vulnerable population.

Fear, fatalism and breast cancer screening in low-income African-American women: the role of clinicians and the health care system.

BACKGROUND: African-American women have the highest breast cancer death rates of all racial/ethnic groups in the US. Reasons for these disparities are multi-factorial, but include lower mammogram utilization among this population. Cultural attitudes and beliefs, such as fear and fatalism, have not been fully explored as potential barriers to mammography among African-American women. OBJECTIVE: To explore the reasons for fear associated with breast cancer screening among low-income African-American women. METHODS: We conducted four focus groups (n = 29) among a sample of African-American women at an urban academic medical center. We used trained race-concordant interviewers with experience discussing preventive health behaviors. Each interview/focus group was audio-taped, transcribed verbatim and imported into Atlas.ti software. Coding was conducted using an iterative process, and each transcription was independently coded by members of the research team. MAIN RESULTS: Several major themes arose in our exploration of fear and other psychosocial barriers to mammogram utilization, including negative health care experiences, fear of the health care system, denial and repression, psychosocial issues, delays in seeking health care, poor health outcomes and fatalism. We constructed a conceptual model for understanding these themes. CONCLUSIONS: Fear of breast cancer screening among low-income African-American women is multi-faceted, and reflects shared experiences within the health care system as well as the psychosocial context in which women live. This study identifies a prominent role for clinicians, particularly primary care physicians, and the health care system to address these barriers to mammogram utilization within this population.

An innovative partnership to address breast cancer screening among vulnerable populations.

CONTEXT: Breast cancer is the most common non-skin malignancy among U.S. women. Vulnerable populations such as low-income women, racial/ethnic minorities, and the uninsured have lower rates of screening mammography use and bear a disproportionate burden of disease. OBJECTIVES: The Breast Cancer Education Project (BCEP) was created to address the needs of medically underserved women in Cook County through high-quality breast cancer screening, education and support. The BCEP also provides a service-learning opportunity in which medical students can provide a valuable health service while obtaining important skills that enable them to work more effectively within medically underserved communities. CONCLUSION: The BCEP is an innovative collaboration between academic medical centers, safety-net health systems, community-based organizations and public health organizations. It represents a model for addressing issues of disparate access to breast cancer screening within vulnerable communities that contribute to higher breast cancer mortality.

Interventions to enhance breast cancer screening, diagnosis, and treatment among racial and ethnic minority women.

The authors conduct a systematic review of the literature to identify interventions designed to enhance breast cancer screening, diagnosis, and treatment among minority women. Most trials in this area have focused on breast cancer screening, while relatively few have addressed diagnostic testing or breast cancer treatment. Among patient-targeted screening interventions, those that are culturally tailored or addressed financial or logistical barriers are generally more effective than reminder-based interventions, especially among women with fewer financial resources and those without previous mammography. Chart-based reminders increase physician adherence to mammography guidelines but are less effective at increasing clinical breast examination. Several trials demonstrate that case management is an effective strategy for expediting diagnostic testing after screening abnormalities have been found. Additional support for these and other proven health care organization-based interventions appears justified and may be necessary to eliminate racial and ethnic breast cancer disparities.

Mobile mammography: assessment of self-referral in reaching medically underserved women.

BACKGROUND: Mobile mammography can be useful in reaching medically underserved women. However, it is not known whether self-referral for mobile mammography is the best approach for reaching the most vulnerable populations. OBJECTIVES: 1) To describe the community outreach patterns of a county-sponsored mobile mammography unit, 2) To characterize the follow-up patterns for women with abnormal screening mammograms, and 3) to identify reasons why women screened on mobile units seek follow-up care outside of the safety-net system. METHODS: We prospectively followed women aged > or = 40 years who received mobile mammograms using electronic records and medical chart review, and surveyed women who had no evidence of diagnostic follow-up. We also reviewed administrative records to determine outreach patterns of the mobile mammography units. RESULTS: Seventy-five percent of mobile visits were with community-based organizations or community health centers. At least one quarter of women chose to follow-up outside of the safety-net for evaluation of abnormal screening mammograms. Of these, nearly 40% reported having insurance or a private physician as the primary reason for having diagnostic evaluation outside of the public hospital system. CONCLUSIONS: Despite serving primarily community-based facilities, self-referral for mobile mammography may not optimally target medically underserved women most in need of breast cancer screening.

Disparities in screening mammography. Current status, interventions and implications.

OBJECTIVE: This paper describes trends in screening mammography utilization over the past decade and assesses the remaining disparities in mammography use among medically underserved women. We also describe the barriers to mammography and report effective interventions to enhance utilization. DESIGN: We reviewed medline and other databases as well as relevant bibliographies. MAIN RESULTS: The United States has dramatically improved its use of screening mammography over the past decade, with increased rates observed in every demographic group. Disparities in screening mammography are decreasing among medically underserved populations but still persist among racial/ethnic minorities and low-income women. Additionally, uninsured women and those with no usual care have the lowest rates of reported mammogram use. However, despite apparent increases in mammogram utilization, there is growing evidence that limitations in the national survey databases lead to overestimations of mammogram use, particularly among low-income racial and ethnic minorities. CONCLUSIONS: The United States may be farther from its national goals of screening mammography, particularly among underserved women, than current data suggests. We should continue to support those interventions that increase mammography use among the medically underserved by addressing the barriers such as cost, language and acculturation limitations, deficits in knowledge and cultural beliefs, literacy and health system barriers such as insurance and having a source regular of medical care. Addressing disparities in the diagnostic and cancer treatment process should also be a priority in order to affect significant change in health outcomes among the underserved.

Screening mammography in the elderly: a review of the issues.

Women age 70 and older have the highest incidence and mortality from breast cancer of any age group. Despite this increased burden of disease, studies show that older women are the least likely to be screened for breast cancer. Barriers to routine mammography in this population include transportation and logistical issues, psychosocial barriers, low literacy levels, and institutional barriers. A variety of interventions, such as community health educators and mobile mammography, have been effective at increasing screening mammography among older women. Although limited, studies have reported that screening mammography reduced breast cancer mortality among women age 65 and older. Research supports continued screening with mammography for elderly women as long as their health is not significantly compromised by comorbid illness, and most organizational guidelines support screening mammography in healthy elderly women. Ultimately, the decision to continue breast cancer screening should be made by the patient and her physician after carefully weighing the risks and benefits of the procedure, which generally become more favorable as women age.