Perceptions of Barriers to and Facilitators of Participation in Health Research Among Transgender People

Purpose: Although transgender people may be at increased risk for a range of health problems, they have been the subject of relatively little health research. An important step toward expanding the evidence base is to understand and address the reasons for nonparticipation and dropout. The aim of this study was to explore the perceptions of barriers to and facilitators of participation in health research among a sample of transgender people in San Francisco, CA, and Atlanta, GA. Methods: Twelve in-person focus groups (FGs) were conducted; six (three with transwomen, three with transmen) were conducted in San Francisco and six FGs were conducted in Atlanta (three with transwomen and three with transmen). FGs were audiorecorded, transcribed, and uploaded to MaxQDA software for analysis. A codebook was used to code transcripts; new codes were added iteratively as they arose. All transcripts were coded by at least 2 of the 4 researchers and, after each transcript was coded, the researchers met to discuss any discrepancies, which were resolved by consensus. Results: Among 67 FG participants, 37 (55%) identified as transmen and 30 (45%) identified as transwomen. The average age of participants was ?41 years (range 18?67) and the majority (61%) were non-Hispanic Whites. Several barriers that can hinder participation in health research were identified, including logistical concerns, issues related to mistrust, a lack of awareness about participation opportunities, and psychosocial/emotional concerns related to being ?outed.? A broad range of facilitators were also identified, including the opportunity to gain knowledge, access medical services, and contribute to the transgender community. Conclusion: These findings provide insights about the perceived barriers to and facilitators of research participation and offer some guidance for researchers in our ongoing effort to engage the transgender community in health research.Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/140297/1/trgh.2016.0023.pd

Occupational Silica Exposure and Chronic Kidney Disease

Occupational exposure to silica may be associated with chronic kidney disease (CKD). Most studies have been conducted in occupational cohorts with high levels of exposure but small numbers of cases. We analyzed data from a population-based case-control study of occupational silica exposure and CKD

Substance use disorders and risk of suicide in a general US population: a case control study

BACKGROUND: Prior research suggests that substance use disorders (SUDs) are associated with risk of suicide mortality, but most previous work has been conducted among Veterans Health Administration patients. Few studies have examined the relationship between SUDs and suicide mortality in general populations. Our study estimates the association of SUDs with suicide mortality in a general US population of men and women who receive care across eight integrated health systems. METHODS: We conducted a case-control study using electronic health records and claims data from eight integrated health systems of the Mental Health Research Network. Participants were 2674 men and women who died by suicide between 2000-2013 and 267,400 matched controls. The main outcome was suicide mortality, assessed using data from the health systems and confirmed by state death data systems. Demographic and diagnostic data on substance use disorders and other health conditions were obtained from each health system. First, we compared descriptive statistics for cases and controls, including age, gender, income, and education. Next, we compared the rate of each substance use disorder category for cases and controls. Finally, we used conditional logistic regression models to estimate unadjusted and adjusted odds of suicide associated with each substance use disorder category. RESULTS: All categories of substance use disorders were associated with increased risk of suicide mortality. Adjusted odds ratios ranged from 2.0 (CI 1.7, 2.3) for patients with tobacco use disorder only to 11.2 (CI 8.0, 15.6) for patients with multiple alcohol, drug, and tobacco use disorders. Substance use disorders were associated with increased relative risk of suicide for both women and men across all categories, but the relative risk was more pronounced in women. CONCLUSIONS: Substance use disorders are associated with significant risk of suicide mortality, especially for women, even after controlling for other important risk factors. Experiencing multiple substance use disorders is particularly risky. These findings suggest increased suicide risk screening and prevention efforts for individuals with substance use disorders are needed

Weighing the Association Between BMI Change and Suicide Mortality

OBJECTIVE: Suicide rates continue to rise, necessitating the identification of risk factors. Obesity and suicide mortality rates have been examined, but associations among weight change, death by suicide, and depression among adults in the United States remain unclear. METHODS: Data from 387 people who died by suicide in 2000-2015 with a recorded body mass index (BMI) in the first and second 6 months preceding their death ( index date ) were extracted from the Mental Health Research Network. Each person was matched with five people in a control group (comprising individuals who did not die by suicide) by age, sex, index year, and health care site (N=1,935). RESULTS: People who died by suicide were predominantly male (71%), White (69%), and middle aged (mean age=57 years) and had a depression diagnosis (55%) and chronic health issues (57%) (corresponding results for the control group: 71% male, 66% White, 14% with depression diagnosis, and 43% with chronic health issues; mean age=56 years). Change in BMI within the year before the index date statistically significantly differed between those who died by suicide (mean change=-0.72±2.42 kg/m(2)) and the control group (mean change=0.06±4.99 kg/m(2)) (p\u3c0.001, Cohen\u27s d=0.17). A one-unit BMI decrease was associated with increased risk for suicide after adjustment for demographic characteristics, mental disorders, and Charlson comorbidity score (adjusted odds ratio=1.11, 95% confidence interval=1.05-1.18, p\u3c0.001). For those without depression, a BMI change was significantly associated with suicide (p\u3c0.001). CONCLUSIONS: An increased suicide mortality rate was associated with weight loss in the year before a suicide after analyses accounted for general and mental health indicators

Cancer and psychiatric diagnoses in the year preceding suicide

BACKGROUND: Patients with cancer are known to be at increased risk for suicide but little is known about the interaction between cancer and psychiatric diagnoses, another well-documented risk factor. METHODS: Electronic medical records from nine healthcare systems participating in the Mental Health Research Network were aggregated to form a retrospective case-control study, with ICD-9 codes used to identify diagnoses in the 1 year prior to death by suicide for cases (N = 3330) or matching index date for controls (N = 297,034). Conditional logistic regression was used to assess differences in cancer and psychiatric diagnoses between cases and controls, controlling for sex and age. RESULTS: Among patients without concurrent psychiatric diagnoses, cancer at disease sites with lower average 5-year survival rates were associated with significantly greater relative risk, while cancer disease sites with survival rates of \u3e70% conferred no increased risk. Patients with most psychiatric diagnoses were at higher risk, however, there was no additional risk conferred to these patients by a concurrent cancer diagnosis. CONCLUSION: We found no evidence of a synergistic effect between cancer and psychiatric diagnoses. However, cancer patients with a concurrent psychiatric illness remain at the highest relative risk for suicide, regardless of cancer disease site, due to strong independent associations between psychiatric diagnoses and suicide. For patients without a concurrent psychiatric illness, cancer disease sites associated with worse prognoses appeared to confer greater suicide risk

Changes in antidepressant use by young people and suicidal behavior after FDA warnings and media coverage: quasi-experimental study

Objective To investigate if the widely publicized warnings in 2003 from the US Food and Drug Administration about a possible increased risk of suicidality with antidepressant use in young people were associated with changes in antidepressant use, suicide attempts, and completed suicides among young people. Design Quasi-experimental study assessing changes in outcomes after the warnings, controlling for pre-existing trends. Setting Automated healthcare claims data (2000-10) derived from the virtual data warehouse of 11 health plans in the US Mental Health Research Network. Participants Study cohorts included adolescents (around 1.1 million), young adults (around 1.4 million), and adults (around 5 million). Main outcome measures Rates of antidepressant dispensings, psychotropic drug poisonings (a validated proxy for suicide attempts), and completed suicides. Results Trends in antidepressant use and poisonings changed abruptly after the warnings. In the second year after the warnings, relative changes in antidepressant use were −31.0% (95% confidence interval −33.0% to −29.0%) among adolescents, −24.3% (−25.4% to −23.2%) among young adults, and −14.5% (−16.0% to −12.9%) among adults. These reflected absolute reductions of 696, 1216, and 1621 dispensings per 100 000 people among adolescents, young adults, and adults, respectively. Simultaneously, there were significant, relative increases in psychotropic drug poisonings in adolescents (21.7%, 95% confidence interval 4.9% to 38.5%) and young adults (33.7%, 26.9% to 40.4%) but not among adults (5.2%, −6.5% to 16.9%). These reflected absolute increases of 2 and 4 poisonings per 100 000 people among adolescents and young adults, respectively (approximately 77 additional poisonings in our cohort of 2.5 million young people). Completed suicides did not change for any age group. Conclusions Safety warnings about antidepressants and widespread media coverage decreased antidepressant use, and there were simultaneous increases in suicide attempts among young people. It is essential to monitor and reduce possible unintended consequences of FDA warnings and media reporting

Mobile Assessment of Depression Treatment Response: Recruitment Challenges and Possible Solutions

Background/Aims: Effective treatments to depression exist, but treatment response is variable. Persons likely to respond to antidepressants often show early change in emotional processing and attentional bias. Methods to assess these constructs passively and at low burden/cost are now available via smartphone apps, with potential for broad dissemination. Methods: This Mental Health Research Network-supported study is testing the feasibility, acceptability and utility of assessing behavior and neuropsychological performance for prediction of depression treatment response using smartphone behavioral apps. Kaiser Permanente Northwest (N = 75) and Georgia members (N = 75) starting new antidepressant treatment are recruited via secure online messaging through their www.kp.org personal health record. Participants complete assessments at baseline, 4, 8 and 12 weeks. App data is shared with their provider. Results: We have experienced several challenges related to study enrollment. First, read rates of the recruitment message are at ~60%. Second, of those who read the message, only 12% visit the study website. Third, among those who visit the study website, only ~3% consent and enroll in the study. Finally, among enrolled participants, approximately 33% successfully download and use the apps. We have implemented several strategies aimed at increasing enrollment: 1) revising recruitment messaging to highlight the unique features of the apps and emphasize that results may help improve their treatment, 2) sending additional recruitment messages via email/text, 3) initiating recruitment calls using Kaiser Permanente’s automated telephone system, 4) providing follow-up phone calls to offer technical assistance for those experiencing difficulties with downloading/using the apps, and 5) introducing tiered incentives to motivate completion of each phase of the study. These efforts appear to be improving our recruitment efforts. Additional interviews will be conducted with participants, and thus additional data about barriers to/facilitators of recruitment and retention will be available prior to the conference. Conclusion: The use of mobile technologies to predict depression treatment response may have significant implications for effective and timely depression care. Understanding the barriers/facilitators of successful enrollment and retention is critical to the implementation of this intervention. Lessons learned from the present study may aid others in similar efforts and in different settings

A Qualitative Exploration of Perceived Health Issues Among Transgender Individuals in Atlanta and San Francisco

Background/Aims: To date, health literature concerning lesbian, gay, bisexual and transgender (LGBT) persons has grouped these individuals into a single LGBT community. Lack of knowledge about transgender or gender-nonconforming (T/GNC) individuals, specifically, precludes T/GNC health from the public health agenda. To address this gap, we undertook a qualitative exploratory study to examine the perceptions of health issues among T/GNC individuals, including the perceived barriers to accessing health care and reliable information about health care services. Methods: Data were drawn from 12 focus group discussions with 75 self-identified T/GNC men and women in Atlanta (n = 37) and San Francisco Bay Area (n = 38). Focus group discussions were stratified by gender and project site and were audio-recorded. The resulting transcripts were then reviewed for potential conceptual categories. Emergent themes were identified based on recurrence and on similarities/differences noted across the transcripts. Results: Preliminary analyses suggest that T/GNC participants are most concerned about HIV/AIDS, mental illness related to trauma and depression, cancer risk and the long-term effects of hormone use. Participants reported experiencing many barriers to receiving timely and effective health care services. These barriers included: 1) poor access to affordable care (primarily due to cost/lack of health insurance coverage), 2) poor availability of culturally competent care, 3) perceived discrimination by health care providers, 4) difficulties navigating complex health care systems, and 5) lack of reliable information about transgender health care services. Though participants felt that the Internet can be a helpful resource for identifying information about providers and services, many participants expressed concerns that online information was not always accurate and was frequently confusing and inadequate. Word-of-mouth and social media resources were perceived to be most helpful. Additional analyses using MAXQDA software will be conducted prior to the conference. Conclusion: Prior research demonstrates a deficiency in information regarding long-term health outcomes for T/GNC individuals. Our preliminary results indicate that T/GNC participants express concerns regarding the long-term effects of cross-sex hormones and surgery on chronic conditions like cancer, diabetes and cardiovascular disease. Additionally, despite recent advances in transgender care, many individuals experience significant barriers to accessing affordable, timely and culturally competent care and reliable information. Lessons learned from this study may inform future behavior-, health system- and policy-level interventions

Perceptions of Barriers to and Facilitators of Participation in Transgender Health Research

Background/Aims: Research regarding the health of transgender and gender-nonconforming (T/GNC) individuals and, moreover, methodological considerations for recruitment of this population, is scarce. As part of a larger effort to understand the feasibility of developing a cohort study to examine long-term health outcomes of hormonal therapy, we conducted focus group discussions to qualitatively explore attitudes toward health research involving T/GNC individuals. Specifically, we aimed to explore the potential facilitators and barriers to recruitment and enrollment and to identify points of influence that would aid future recruitment. Methods: Data were drawn from 12 in-person focus group discussions with 75 self-identified T/GNC men and women in Atlanta (n = 37) and San Francisco Bay Area (n = 38). Discussions were stratified by gender and project site and were audio-recorded. The resulting transcripts were then reviewed for potential conceptual categories using the focus group discussion questions as initial categories. Emergent themes were identified based on both recurrence and similarities/differences noted across transcripts. Results: Preliminary analyses suggest that individuals who identify as T/GNC experience several barriers to research participation. These include: 1) being unaware of the research, 2) having transportation and financial challenges, 3) believing that the research questions are irrelevant to the lives of T/GNC individuals, and 4) feeling distrustful of the medical and research community. Suggestions for how to improve research participation by individuals in the T/GNC community include: 1) recruiting in diverse community-based locations using face-to-face referral/snowball-based methods; 2) scheduling research visits in locations accessible via public transportation and offering a variety of days/times to accommodate personal and professional responsibilities; 3) providing incentives including cash/gift cards, food and free/discounted health services; and 4) prioritizing transparency regarding the research questions and how the results will benefit the T/GNC community. Additional analyses of the transcripts using MAXQDA software will be conducted prior to the conference. Conclusion: T/GNC individuals form a sizeable, unique and underserved community. Understanding the barriers and facilitators of successful enrollment and retention in research studies is critical to addressing health disparities experienced by this community. Results from these analyses will help to identify points of influence that would aid recruitment of T/GNC individuals into future observational studies and intervention trials

Difference in effectiveness of medication adherence intervention by health literacy level.

CONTEXT: There is little research investigating whether health information technologies, such as interactive voice recognition, are effective ways to deliver information to individuals with lower health literacy. OBJECTIVE: Determine the extent to which the impact of an interactive voice recognition-based intervention to improve medication adherence appeared to vary by participants\u27 health literacy level. DESIGN: Promoting Adherence to Improve Effectiveness of Cardiovascular Disease Therapies (PATIENT) was a randomized clinical trial designed to test the impact, compared with usual care, of 2 technology-based interventions that leveraged interactive voice recognition to promote medication adherence. A 14% subset of participants was sent a survey that included questions on health literacy. This exploratory analysis was limited to the 833 individuals who responded to the survey and provided data on health literacy. MAIN OUTCOME MEASURES: Adherence to statins and/or angiotensin-converting enzyme inhibitors and/or angiotensin II receptor blockers. RESULTS: Although intervention effects did not differ significantly by level of health literacy, the data were suggestive of differential intervention effects by health literacy level. CONCLUSIONS: The differences in intervention effects for high vs low health literacy in this exploratory analysis are consistent with the hypothesis that individuals with lower health literacy may derive greater benefit from this type of intervention compared with individuals with higher health literacy. Additional studies are needed to further explore this finding