Patient and Community Factors Affecting Treatment Access for Opioid Use Disorder.

OBJECTIVE: To examine whether access to treatment for women with opioid use disorder (OUD) varied by race and ethnicity, community characteristics, and pregnancy status. METHODS: We conducted a secondary data analysis of a simulated patient caller study of buprenorphine-waivered prescribers and opioid-treatment programs in 10 U.S. states. We conducted multivariable analyses, accounting for potential confounders, to evaluate factors associated with likelihood of successfully securing an appointment. Descriptive statistics and significance testing examined 1) caller characteristics and call outcome by assigned race and ethnicity and clinic type (combined, opioid-treatment programs, and buprenorphine-waivered prescribers) and 2) clinic and community characteristics and call outcome by community race and ethnicity distribution (majority White vs majority Black, Hispanic, Asian, American Indian, Alaska Native, Native Hawaiian, or Pacific Islander) and clinic type. A multiple logistic regression model was fitted to assess the likelihood of obtaining an appointment by callers' race and ethnicity and pregnancy status with the exposure of interest being majority Black, Hispanic, Asian, American Indian, Alaska Native, Native Hawaiian, or Pacific Islander community distribution. RESULTS: In total, 3,547 calls reached clinics to schedule appointments. Buprenorphine-waivered prescribers were more likely to be in communities that were more than 50% White (88.9% vs 77.3%, P<.001), and opioid-treatment programs were more likely to be in communities that were less than 50% White (11.1% vs 22.7%, P<.001). Callers were more likely to be granted appointments in majority Black, Hispanic, Asian, American Indian, Alaska Native, Native Hawaiian, or Pacific Islander communities (adjusted odds ratio [aOR] 1.06, 95% CI 1.02-1.10 per 10% Black, Hispanic, Asian, American Indian, Alaska Native, Native Hawaiian, or Pacific Islander community population) and at opioid-treatment programs (aOR 4.94, 95% CI 3.52-6.92) and if they were not pregnant (aOR 1.79, 95% CI 1.53-2.09). CONCLUSION: Clinic distribution and likelihood of acceptance for treatment varied by community race and ethnicity distribution. Access to treatment for OUD remains challenging for pregnant people and in many historically marginalized U.S. communities.

Infertility and treatment-seeking practices among females and males with sickle cell disease in the Sickle Cell Disease Implementation Consortium registry.

OBJECTIVE: To describe the prevalence of infertility and infertility treatment seeking among people enrolled in the Sickle Cell Disease Implementation Consortium (SCDIC) registry and identify sociodemographic and clinical correlates of infertility. DESIGN: Cross-sectional. PARTICIPANTS: The study population included 2108 women and men (≥18 years of age) enrolled in the SCDIC registry who completed the fertility questionnaire. RESULTS: All participants who completed the infertility-specific questions were included in the analysis (1224 females; 884 males). Of these, 16.9% of males and 23.7% of females reported infertility, in contrast to rates in the general population (12% of males; 11% of females). Only 22.8% of this subgroup had sought a fertility consultation; of these, 41% received infertility testing and 58% received advice, yet only a few received specific treatment: ovulation medication (19.1%), fallopian tubal surgery (4.8%), other female treatment (17.5%), varicocelectomy (8.1%), or other male treatment (10.8%). Increasing age, employment status, and interaction between gender and single marital status are associated with reported infertility. We did not observe differences between groups relative to sickle cell disease (SCD) genotype, a broad category of self-reported hydroxyurea use any time during life, type of medical insurance, income, or education. CONCLUSION: To our knowledge, this is the first study to examine self-reported identification of and treatment for infertility among a large sample of people with SCD. These findings suggest that (a) infertility occurs at a higher rate, but fertility care treatment seeking is less frequent than in the general public; and (b) sociodemographic and clinical differences between individuals who report experiencing infertility and those who do not did not emerge in this study.

Stigma and quality of life in adults with sickle cell disease in Jamaica and the United States.

Sickle cell disease (SCD) is the most common inherited blood disorder in both Jamaica and the United States and is characterized by poor quality of life and debilitating complications, with the hallmark symptom being pain caused by acute and chronic conditions. Individuals with SCD often experience stigma due to their disease status, opioid use, and race. This study sought to understand the influence of perceived stigma and demographic/clinical characteristics on quality of life in adults with SCD in Jamaica (n = 50) and the United States (n = 50). Participants completed interviewer-administered surveys including demographic/clinical characteristics; the Measure of Sickle Cell Stigma (MoSCS); and the Adult Sickle Cell Quality of Life Measurement System (ASCQ-Me). A set of general linear models for each country was built to examine the influence of explanatory variables on the quality of life outcomes. Overall, stigma scores were low for both countries, with the exception of the MoSCS disclosure concerns and expected discrimination subscales, where scores averaged medium and high, respectively. In both countries, being employed was associated with better quality of life; and reports of stigma (internalized stigma and expected discrimination) was associated with worse quality of life. These findings have several implications for healthcare providers caring for individuals with SCD, policy makers, and researchers. Specifically, findings can be used to advocate for improved access to mental health care for individuals with SCD and inform stigma reduction intervention approaches in SCD.

Evaluating the efficacy of telephone-based outreach in addressing hypertension control among black men with severe hypertension: An observational study.

BACKGROUND: The high prevalence of uncontrolled hypertension (systolic blood pressure [SBP] ≥140 mmHg or diastolic blood pressure [DBP] ≥90 mmHg) in Black patients represents a significant racial health disparity in the United States. AIMS: This study evaluated the efficacy of a telephone-based strategy for inviting high-risk patients with severe hypertension to weekly self-management education classes. Further, the study assessed how the outreach intervention correlated with relevant quality improvement outcomes, including improved blood pressure and primary care follow-up among our clinic population of Black men with severe hypertension. METHODS: A cohort of 265 Black men aged ≥18 years with SBP ≥160 mmHg or DBP ≥100 mmHg at the most recent clinic visit were identified using Epic reports formatted for Federal Uniformed Data Set annual reporting. Telephone outreach was used to invite the cohort to attend weekly in-person classes facilitated by various healthcare professionals. Logistic regression was performed to determine the associations between being reached by phone with (1) class attendance and (2) follow-up appointment attendance. RESULTS: Most of the Black men were single (57.4%, n = 152), 49.1% had history of alcohol or substance use (n = 130), and 35.8% (n = 95) was uninsured. The average age was 55.6 years (SD = 11.6). After controlling for sociodemographic factors, being reached by phone was significantly associated with an increased likelihood of patient attendance at follow-up appointments (OR = 1.91, p = .038) but not with class attendance (OR = 2.45, p = .155). Patients who attended a follow-up appointment experienced significant reductions in both SBP and DBP at 9 months. LINKING EVIDENCE TO ACTION: Telephone outreach was labor-intensive but effective in keeping under-resourced patient populations engaged in primary care. Future work should aim to develop more efficient strategies for engaging high-risk patients in self-monitoring education to manage hypertension.

Patient expectations and preferences for community-based hypertension classes with implications for action.

BACKGROUND: Uncontrolled hypertension disproportionately affects Black men. Patient engagement with health promotion and health behavior programs for hypertension control is low. We held evidence-based hypertension classes at a Federally Qualified Health Center. AIMS: The aim of this project was to elicit patient preferences and expectations for community-based hypertension classes. METHODS: Group hypertension classes were held at a Federally Qualified Health Center. The priority population was Black men with hypertension. Semi-structured interviews were conducted with the group class attendees. Two independent coders performed content analysis using field notes from the interviews. RESULTS: Seven group class attendees were interviewed. Six interviewees were Black males, one was a Black female, and the mean age was 65.7 years. Content analysis of the interview field notes revealed five content areas: (1) Recommendation of Group Classes to a Friend, (2) Expectations for the Group Classes, (3) Reasons for Continued Attendance, (4) Lifestyle Changes and Adopting the Group Class Lessons, and (5) Feedback and Recommendations to Improve Group Classes. Findings suggest that creating a cultural context in which open, transparent discussion of blood pressure occur can be achieved. Thus, regarding acceptability, classes fulfilled and often exceeded the attendees' expectations and needs. LINKING EVIDENCE TO ACTION: Our findings suggest that community-based group classes are a viable intervention to contribute toward addressing the disparity of hypertension control among Black men. When designing peer-group interventions, taking patient preferences and expectations into account increases the effectiveness of these interventions. The qualitative narrative provided in this paper contributes to the development of similar community-based group classes for the management of severe hypertension.

Longitudinal study of the cascading effects of racial discrimination on parenting and adjustment among African American youth.

Attachment theory posits that parenting plays akey role in children's attachment and subsequent development. Given the normativity of racial discrimination on everyday life experiences of African American families, there is a need to integrate historical and socio-environmental processes in studies to understand how minoritized parents raise secure and stable children. Results from the current study revealed direct associations between mothers' reports of discrimination and heightened depression and anxiety. Maternal discriminatory experiences were indirectly associated with more negative parenting and compromised parent-child relationship quality, through mothers' psychological functioning. Elevated emotional and behavioral management problems among youth were directly associated with exposure to racial discrimination. Exposure to discrimination during middle childhood facilitated adapted or learned strategies to manage similar situations as youth transitioned into adolescence, with reduced patterns of depressive symptomology. No significant gender effects emerged. Implications for theoretical advancement and future research are provided.

Sex-based differences in the manifestations and complications of sickle cell disease: Report from the Sickle Cell Disease Implementation Consortium.

INTRODUCTION: Sex-based clinical outcome differences in sickle cell disease (SCD) remain largely unknown despite evidence that female sex is associated with an increased lifespan. To better characterize sex-based differences in SCD, we assessed pain, treatment characteristics, laboratory measures and complications among males and females currently enrolled in the Sickle Cell Disease Implementation Consortium (SCDIC) registry. METHODS: The SCDIC consists of eight comprehensive SCD centers and one data coordinating center that received funding from the National Heart Lung and Blood Institute to improve outcomes for individuals with SCD. Eligibility criteria included: 15 to 45 years of age and a confirmed diagnosis of SCD. Self-report surveys were completed and data were also abstracted from the participants' medical records. RESULTS: A total of 2,124 participants were included (mean age: 27.8 years; 56% female). The majority had hemoglobin SS SCD genotype. Females had worse reports of pain severity (mean (SD) T-score 51.6 (9.6) vs 49.3 (10), p<0.001), more vaso-occlusive episodes (p = 0.01) and a higher occurrence of 3 or more hospital admissions in the past year (30.9% vs. 25.5, p = 0.03). On multivariable analysis, males had higher odds of acute chest syndrome (odds ratio (OR) 1.4, p = 0.002), cardiovascular (OR 1.70, p<0.001) and musculoskeletal (OR 1.33, p = 0.0034) complications and lower odds of depression (OR 0.77, p = 0.0381). Females had higher fetal hemoglobin levels with and without hydroxyurea use (9.6% vs 8.5%, p = 0.03 and 3% vs 2.2%, p = 0.0005, respectively). CONCLUSION: Our data suggests that sex differences in clinical outcomes do occur among individuals with SCD. Future research needs to explore the mechanisms underlying these differences.

Efficacy of Hypertension Self-Management Classes Among Patients at a Federally Qualified Health Center.

Structural racism has contributed to persistent racial disparities in hypertension control, with Black men suffering the highest prevalence of uncontrolled hypertension. Lincoln Community Health Center, our urban Federally Qualified Health Center (FQHC), aimed to use hypertension self-management classes to improve hypertension control among our clinic patients, particularly Black men. Patients attending classes learned about hypertension, were given blood pressure cuffs to use at home, and had the opportunity to speak to physicians in a group setting. We used a nonexperimental quality improvement intervention design to identify baseline differences between participants who attended multiple classes and those who attended only 1 class. Participants who attended multiple classes, most of whom were Black men, achieved an average blood pressure reduction of 19.1/14.8 mm Hg. Although the classes were effective, current policies around health insurance reimbursement and federal quality reporting standards hamper the ability of health care providers to implement such patient education initiatives.

Lessons from implementing community-based group classes for severe hypertension.

Due to the impact of persistent structural racism, Black men have low rates of hypertension treatment and control despite having high rates of hypertension-related mortality. Peer-based education can improve blood pressure monitoring and lower blood pressure in Black men with hypertension. To address this disparity, we implemented weekly community-based group classes for severe hypertension at a Federally Qualified Health Center. After 9 months, 28 classes were held and 96 individuals were served. Fifty-six percent of the person-hours of attendance have been by Black men. Seven individuals were interviewed about their perspectives and preferences for the classes. They reported that the peer-based model of the group classes was advantageous, and they would recommend the classes to a friend. Successes of implementation included (a) ability to facilitate medication adjustments for participants with blood pressure readings that were over target goal, (b) capacity to give participants take-home blood pressure monitors, (c) and the community-centered approach. Challenges included variability in attendance by participants and retention of individuals with uncontrolled hypertension in primary care. These findings have implications for other Federally Qualified Health Centers seeking to design similar health promotion programs and policy makers evaluating the funding and reimbursement models for community-based disease management programs.

An Interrupted Time Series Analysis of the Dissemination of a Sickle Cell Vaso-Occlusive Episode Treatment Algorithm and a Case Management Referral Form for Individuals With Sickle Cell Disease in the Emergency Department.

BACKGROUND: Sickle cell disease is associated with frequent vaso-occlusive episode and emergency department visits. Our group developed (1) a vaso-occlusive episode treatment algorithm based on the National Heart, Lung, and Blood Institute recommendations, and (2) a case management referral form to identify social behavioral health needs of patients with sickle cell disease in the emergency department. The aims of this project were to (1) disseminate the vaso-occlusive episode algorithm and case management referral form, and (2) to evaluate the individual provider-reported awareness, use, and preferred method of access to each tool among emergency department providers in North Carolina. METHODS: An interrupted time series analysis was used to study the impact that an educational effort had on the awareness of a sickle cell vaso-occlusive episode treatment algorithm and a case management referral form. A targeted list was developed to identify the providers working in emergency departments with the largest number of sickle cell disease patient visits. In-service education was provided to targeted emergency departments in North Carolina over a period of 3 years. The vaso-occlusive episode algorithm and case management referral form were put up on the websites of professional organizations. Surveys were provided to emergency department providers at these targeted emergency departments with a baseline and post dissemination at 20 and 32 months for assessing the provider awareness, use, and preferred method of access of the tools. Additional feedback could be given by the participants through telephone interviews. Descriptive statistics were obtained, and content analysis was performed on interviews. RESULTS: We received survey responses for the following periods: baseline (T1, n = 190), post dissemination at 20 (T2, n = 142), and 32 months (T3, n = 93). Awareness of the tools was between 42% (baseline) and 41% (post dissemination at T2, T3) for the vaso-occlusive episodes algorithm and 25% (baseline) and 29% (post dissemination at T2, T3) for the case management referral form. However, use of these tools was found to be low as only 19% of the emergency department providers used the vaso-occlusive episode algorithm at T1 and 13% T2, while 5% of emergency department providers used the case management referral form at T1 and 6% at T2. With further education about the tools, an increase in the usage of the tools was observed T3, which was 29% for the vaso-occlusive episodes algorithm and 9% for the case management referral form. Lack of incorporation of the decision support tools into emergency department processes was observed to be an overarching barrier to dissemination of the tools identified in interviews (n = 8). CONCLUSIONS: This study can be used to inform future strategies on dissemination of evidence-based tools to emergency department providers.

A pilot test of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) and the Jenerette Self-Care Assessment (J-SAT) Tools in adults with sickle cell disease.

BACKGROUND: The purpose of this study was to pilot test two sickle cell-specific instruments, the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) and Jenerette Self-Care Assessment Tool (J-SAT), to determine recruitment rate, percent completion of the instrument battery, and patient perceptions of health-related quality of life outcomes and self-care activities in a convenience sample of adults with sickle cell disease (SCD). METHODS: A cross-sectional pilot study was conducted. Participants were recruited from a sickle cell clinic and conference on SCD. Subjects completed self-administered assessments including demographic and clinical characteristics, ASCQ-Me, and the J-SAT. RESULTS: Twenty of 22 participants completed the instruments (2 refusals) and most instruments had 100% completion rates. Participants reported average to healthier status on ASCQ-Me measures than a normative referent population of 556 individuals with SCD. Participants also reported high disease severity and high J-SAT scores (mean = 30.2), indicating frequent participation in self-care activities. CONCLUSIONS: There was good participation, low refusal rates, and subjects completed the instruments and items without difficulty. Based on this work, a multi-method, multi-site study in Jamaica and the USA will be conducted to understand the relationships between health-related quality of life, stigma, and self-management in adults with SCD.

Barriers and facilitators to care for individuals with sickle cell disease in central North Carolina: The emergency department providers' perspective.

BACKGROUND: Sickle cell disease (SCD) is an inherited blood disorder associated with acute pain crisis and other complications that lead to frequent emergency department (ED) visits. To improve outcomes, the National Heart, Lung and Blood Institute (NHLBI) published recommendations for management of acute pain crisis. NHLBI also funded eight centers across the United States to participate in the Sickle Cell Disease Implementation Consortium. This six-year effort consists of two phases. Phase one involved conducting needs assessments of barriers and facilitators to SCD care. The aim of this study was to describe challenges and facilitators to caring for SCD from the perspective of ED providers in central North Carolina (NC). METHODS AND FINDINGS: We conducted a needs assessment survey with ED providers throughout NC. We also conducted focus groups and an interview with ED providers from three healthcare facilities in central NC. One hundred and eleven surveys (60.6% physicians, 26% registered nurses, 13.5% physician assistants) were completed and 13 providers participated in 3 focus groups and 1 interview. Slightly more than half (50. 4%) utilized individualized dosing protocols to treat sickle cell pain. Only 32.4% of the providers were aware of the NHLBI SCD recommendations. Barriers to care from the survey included: patient behavior (67.57%), the opioid epidemic (67.57%), overcrowding (64.86%), and concern about addiction (49.55%). Perceived barriers to care identified in the focus groups and interview included: high patient volumes, lack of SCD care protocols, poor communication among providers and stigma. Facilitators to care included: individualized pain plans, comfort prescribing opioids and electronic medical records. CONCLUSION: SCD care is influenced by many factors. Our results illuminate the need for increased use of the NHLBI SCD recommendations, individualized pain protocols, and use of electronic medical records and other care-interventions, specifically geared towards improving provider knowledge and mitigating provider bias.

Twelve tips for teaching a comprehensive disease-focused course with a global perspective: A sickle cell disease example.

A disease-focused course entitled "Understanding Sickle Cell Disease: A Biopsychosocial Approach" addressed the complex nature of SCD using patient-centered, global and interdisciplinary approaches. Sickle cell disease (SCD) is a rare inherited blood disorder that requires multidisciplinary care. Worldwide 20-25 million individuals have SCD, which is associated with a shortened lifespan due to many medical complications and social and behavioral health challenges. Health care professionals often have limited knowledge of SCD as they typically learn about it within the context of their own disciplines. This article provides twelve tips for educators that can be used to develop a similar course on any disease, with considerations for both low- and high-resource countries. The tips were devised from personal experience and available literature. Through these twelve tips, we provide a practical framework for increasing knowledge of complex diseases like SCD using a comprehensive elective course.

Stigma of Sickle Cell Disease: A Systematic Review.

The aim of this systematic review was to synthesize the literature regarding health-related stigma in adolescents and adults living with sickle cell disease (SCD). Four domains were identified from 27 studies: (1) social consequences of stigma; (2) the effect of stigma on psychological well-being; (3) the effect of stigma on physiological well-being; and (4) the impact of stigma on patient-provider relationships and care-seeking behaviors. Current literature revealed that SCD stigma has detrimental consequences. Methodological issues as well as research and practice implications were identified. Future research should further examine the impact of health-related stigma on self-management of SCD.

The Relationship Between Sexual Violence and Disordered Eating.

College women who experience sexual violence (SV) and disordered eating (DE) are at risk for comorbid mental health symptomology (depression, somatization) and risky health behaviors (dating status, alcohol use). The purpose of this study is to explore associations of coexisting sexual violence history and disordered eating with mental health and health behaviors in college women. This cross sectional descriptive study is a secondary analysis of survey data from college students from five universities (n = 2747). College women with both SV and DE were more likely to experience increased depressive and somatic symptoms and participate in risky health behaviors.