Engaging patients as partners in research: Factors associated with awareness, interest, and engagement as research partners

Objectives: There is growing interest in engaging patients in healthcare research, which raises important questions about the factors that may promote such engagement. The purpose of this study was to examine the association between patient characteristics and three aspects of patient engagement in the medical research process: awareness, interest, and actual participation. Methods: Cross-sectional, bivariate analyses were employed using the 2014 Health Information National Trends Survey. Results: Analyses suggest modest levels of interest among respondents engaging as patient partners in the research process (37.7% of respondents), low level of awareness of what patient engagement in research was (15.3% of respondents), and a very low level of actual participation (2.7% of respondents). Respondents of higher socioeconomic status and with more positive patient attitudes regarding their health and healthcare were more likely to be interested in research. In comparison, relatively few patient characteristics were significantly associated with patient awareness and actual participation in research. Conclusion: Although it is promising that people are interested in being engaged in research, the results suggest that there is work to be done to raise awareness of these engagement opportunities. Likewise, the gap between awareness and participation highlights opportunities to identify why patients may be reluctant to participate even when they are aware of research opportunities

Muslim Women’s use of contraception in the United States

Abstract Background American Muslim women are an understudied population; thus, significant knowledge gaps exist related to their most basic health behaviors and indicators. Considering this, we examined American Muslim women’s contraception utilization patterns. Methods Self-reported data collected in late 2015 were analyzed. Women who identified as Muslim, were at least 18 years old, sexually active, and current residents of the United States (n = 224) met the inclusion criteria. Convenience sampling was employed. Multivariate logistic regression models estimated associations between demographics, marital status, ethnicity, nativity, health insurance, religious practice, and contraception use. Results Identifying as Muslim, in general, was significantly associated with greater odds of using contraception in general and condoms compared to American Muslim women who identify as Sunni. Identifying as Shia was associated with greater odds of using oral contraceptive pills relative to Sunni respondents. South Asian ethnicity was associated with higher odds of using oral contraceptive pills compared to those of Middle Eastern or North African ethnicity. Conclusions Findings suggest American Muslim women’s contraception utilization patterns share certain similarities with both American women in general and disadvantaged racial and ethnic minority groups in the United States, implying that factors that influence American Muslim women’s use of contraceptives are possibly countervailing and likely multifaceted. More research is needed to accurately identify associates of contraceptive use in this population. This work serves as a starting point for researchers and practitioners seeking to better understand reproductive health decision in this understudied population

Clinical Outcomes in COVID-19 Patients Treated with Immunotherapy

Introduction: The full impact of COVID-19 infections on patients with cancer who are actively being treated with chemotherapy or immune checkpoint inhibitors (ICIs) has not been fully defined. Our goal was to track clinical outcomes in this specific patient population. Methods: We performed a retrospective chart review of 121 patients (age > 18 years) at the University of Alabama at Birmingham from January 2020 to December 2021 with an advanced solid malignancy that were eligible to be treated with ICIs or on current therapy within 12 months of their COVID-19 diagnosis. Results: A total of 121 patients were examined in this study, and 61 (50.4%) received immunotherapy treatment within 12 months. One quarter of the patients on ICIs passed away, compared to 13% of the post-chemotherapy cohort. Patients who were vaccinated for COVID-19 had lower mortality compared to unvaccinated patients (X2 = 15.19, p p < 0.01). Conclusions: COVID-19-related ICI mortality was higher compared to patients receiving chemotherapy. However, ICI cessation or delay is unwarranted as long there has been a risk–benefit assessment undertaken with the patient

Symptom burden predicts nursing home admissions among older adults.

ContextSymptom burden has been associated with functional decline in community-dwelling older adults and may be responsive to interventions. Known predictors of nursing home (NH) admission are often nonmodifiable.ObjectivesTo determine if symptom burden independently predicted NH admission among community-dwelling older adults over an eight and a half-year follow-up period.MethodsA random sample of community-dwelling Medicare beneficiaries in Alabama, stratified by race, gender, and rural/urban residence had baseline in-home assessments of sociodemographic measurements, Charlson comorbidity count, and symptoms. Symptom burden was derived from a count of 10 patient-reported symptoms. Nursing home admissions were determined from telephone interviews conducted every six months over the eight and a half years of study. Cox proportional hazard modeling was used to examine the significance of symptom burden as a predictor for NH admission after adjusting for other variables.ResultsThe mean ± SD age of the sample (N = 999) was 75.3 ± 6.7 years, and the sample was 51% rural, 50% African American, and 50% male. Thirty-eight percent (n = 380) had symptom burden scores ≥2. Seventy-five participants (7.5%) had confirmed dates for NH admission during the eight and a half years of follow-up. Using Cox proportional hazard modeling, symptom burden remained an independent predictor of time to NH placement (hazard ratio = 1.11; P = 0.02), even after adjustment for comorbidity count, race, sex, and age.ConclusionSymptom burden is an independent risk factor for NH admission. Aggressive management of symptoms in older adults may reduce or delay NH admission

Transgender Women’s Drug Use in the Dominican Republic

Purpose: Studies on drug use in transgender populations, particularly those in resource-limited settings, are scarce. Considering that drug use can be a coping mechanism to deal with stigma and traumatic experiences, we examined associations between stigma, trauma, and drug use in a national sample of transgender women from the Dominican Republic. Methods: Bivariate analyses examined differences between drug users and abstainers (n=287). Multivariate analyses reported odds ratios (OR) with general drug, marijuana, and cocaine use as outcomes (n=243). Results: A quarter of respondents (24.5%) experienced sexual abuse, 12.1% were tortured, and 20.1% experienced a murder attempt. More than a quarter reported using illegal drugs (26.1%). Drug users had lower socioeconomic status; 30.0% of drug users had a primary level of education or less (18.2% of abstainers) and 17.6% of drug users had higher income, defined as greater than 10,001 pesos (∼$210 United States Dollars, USD) per month (28.1% of abstainers). More than half of drug users experienced some form of trauma (51.4%) compared to 43.5% of abstainers, and 28.4% of drug users, compared to 17.1% of abstainers, experienced a murder attempt on her life. Independent sample t-tests found significant differences between drug users and abstainers. Transgender women who experienced sexual abuse had three times high odds of using cocaine. Drug users were more likely to have experienced sexual abuse and attempted suicide (p<0.05 for both). Respondents who attempted suicide had higher odds of using drugs generally and using marijuana specifically, compared to respondents who had not attempted suicide (OR=2.665 and 3.168, respectively). Higher scores on the stigma scale were associated with higher odds of any drug use and cocaine use (OR=1.132 and 1.325, respectively). Conclusions: Although some nations have implemented antidiscrimination policies protecting transgender citizens, these policies are not consistently enforced. Eliminating stigma and stigmatizing policies may reduce rates of drug use as a coping mechanism.University of Alabama at Birmingham (UAB) Sparkman Center for Global Healt

Transgender female sex workers’ HIV knowledge, experienced stigma, and condom use in the Dominican Republic

<div><p>Introduction</p><p>Not only do transgender female sex workers have some of the highest rates of sexually transmitted infections (STI), human immunodeficiency virus (HIV), and experienced stigma, they also have higher likelihood of early sexual debut and some of the lowest levels of educational attainment compared to other stigmatized populations. Some of the most common interventions designed to reduce transmission of HIV and STIs seek to educate high-risk groups on sexual health and encourage condom use across all partner types; however, reaching stigmatized populations, particularly those in resource-limited settings, is particularly challenging. Considering the importance of condom use in stopping the spread of HIV, the aim of this study was two-fold; first to characterize this hard-to-reach population of transgender female sex workers in the Dominican Republic, and second, to assess associations between their HIV knowledge, experienced stigma, and condom use across three partner types.</p><p>Methods</p><p>We analyzed self-reported data from the Questionnaire for Transgender Sex Workers (N = 78). Respondents were interviewed at their workplaces. Univariate and bivariate analyses were employed. Fisher Chi-square tests assessed differences in HIV knowledge and experienced stigma by condom use across partner types.</p><p>Results</p><p>HIV knowledge was alarmingly low, condom use varied across partner type, and the respondents in our sample had high levels of experienced stigma. Average age of first sexual experience was 13.12 years with a youngest age reported of 7. Dominican Republic statutory rape laws indicate 18 years is the age of consent; thus, many of these transgender women’s first sexual encounters would be considered forcible (rape) and constitute a prosecutable crime. On average, respondents reported 8.45 sexual partners in the prior month, with a maximum of 49 partners. Approximately two thirds of respondents used a condom the last time they had sex with a regular partner. This was considerably lower than condom use reported with coercive partners (92.96%) and clients (91.78%). Bivariate analyses revealed two trends: experienced stigma was associated with lower rates of condom use, and lower HIV knowledge was associated with lower rates of condom use. The former provides additional evidence that experienced stigma may become internalized, affecting individual-level behaviors—lowering self-confidence and resilience—making it more difficult to negotiate condom use due to lack of self-efficacy and desire to show trust in one’s partner. The latter supports public health research that suggests gaps in HIV knowledge persist and are pronounced in highly stigmatized populations.</p><p>Discussion</p><p>The vulnerabilities experienced by transgender persons, particularly in environments that vehemently adhere to conservative ideologies related to sex and gender, are significant and harm this population. These vulnerabilities could potentially be addressed through critically examining of impact of policies that indirectly promote or allow victimization of transgender citizens and subsequently diminish the effectiveness of public health and educational interventions. By taking action through the revocation of such laws, the Dominican Republic has the opportunity to improve overall population health, to protect some of its most stigmatized citizens, and to become the flag bearer of enhanced human rights in the Caribbean and Latin America.</p></div

Measuring symptoms in community-dwelling older adults: the psychometric properties of a brief symptom screen.

BackgroundWith aging, the probability of experiencing multiple chronic conditions has increased, along with symptoms associated with these conditions. Symptoms form a central component of illness burden, and distress. To date, most symptom measures have focused on a particular disease population.ObjectiveWe aimed to develop and evaluate a simple symptom screen using data obtained from a representative sample of community-dwelling older adults.MethodsPsychometric analyses were conducted on 10 self-reported dichotomous symptom indicators collected during in-person interviews from a sample of 1000 community-dwelling older adults. Symptoms included shortness of breath, feeling tired or fatigued, problems with balance or dizziness, perceived weakness in legs, constipation, daily pain, stiffness, poor appetite, anxiety, and anhedonia.ResultsOver one third of the individuals (37.4%) had 5 or more concurrent symptoms. Stiffness and feeling tired were the most common symptoms. Confirmatory factor analyses were performed on the 10 symptoms for single factor and bifactor (physical and affective) models of symptom reporting. Goodness-of-fit indices indicated better fit for the bifactor model (χdf=10=89.6; P&lt;0.001), but the practical significance of the improvement in fit was negligible. Differential item functioning analyses showed some differences of relatively high magnitude in location parameters by race; however, because the differential item functioning was in different directions, the impact on the overall measure was most likely lessened.ConclusionsAmong community-dwelling older adults, a large proportion experienced multiple co-occurring symptoms. This Brief Symptom Screen can be used to quickly measure the overall symptom load in older adult populations, including those with multiple chronic conditions

Symptom burden predicts hospitalization independent of comorbidity in community-dwelling older adults.

ObjectivesTo determine whether cumulative symptom burden predicts hospitalization or emergency department (ED) visits in a cohort of older adults.DesignProspective, observational study with a baseline in-home assessment of symptom burden.SettingCentral Alabama.ParticipantsNine hundred eighty community-dwelling adults aged 65 and older (mean 75.3 ± 6.7) recruited from a random sample of Medicare beneficiaries stratified according to sex, race, and urban/rural residence.MeasurementsSymptom burden score (range 0-10). One point was given for each symptom reported: shortness of breath, tiredness or fatigue, problems with balance or dizziness, leg weakness, poor appetite, pain, stiffness, constipation, anxiety, and loss of interest in activities. Dependent variables were hospitalizations and ED visits, assessed every 6 months during the 8.5-year follow-up period. Using Cox proportional hazards models, time from the baseline in-home assessment to the first hospitalization and first hospitalization or ED visit was determined.ResultsDuring the 8.5-year follow-up period, 545 (55.6%) participants were hospitalized or had an ED visit. Participants with greater symptom burden had higher risk of hospitalization (hazard ratio (HR) = 1.09, 95% confidence interval (CI) = 1.05-1.14) and hospitalization or ED visit (HR = 1.10, 95% CI = 1.06-1.14) than those with lower scores. Participants living in rural areas had significantly lower risk of hospitalization (HR = 0.83, 95% CI = 0.69-0.99) and hospitalization or ED visit (HR = 0.80, 95% CI = 0.70-0.95) than individuals in urban areas, independent of symptom burden and comorbidity.ConclusionGreater symptom burden was associated with higher risk of hospitalization and ED visits in community-dwelling older adults. Healthcare providers treating older adults should consider symptom burden to be an additional risk factor for subsequent hospital utilization

Bivariate association between condom use during last sexual encounter across three partner types.

<p>Bivariate association between condom use during last sexual encounter across three partner types.</p