Geographic disparities in late HIV diagnoses in Tennessee: Opportunities for interventions in the rural Southeast.

PURPOSE: Incident HIV remains an important public health issue in the US South, the region leading the nation in HIV incidence, rural HIV cases, and HIV-related deaths. Late diagnoses drive incident HIV and understanding factors driving late diagnoses is critical for developing locally relevant HIV testing and prevention interventions, decreasing HIV transmission, and ending the HIV epidemic. METHODS: Retrospective cohort study utilizing Tennessee Department of Health (TDH) surveillance data and US Census Bureau data. Adults of ≥18-year old with a new HIV diagnosis between January 1, 2015 and December 31, 2019 identified in the TDH electronic HIV/AIDS Reporting System were included. Individuals were followed from initial HIV diagnosis until death, 90 days of follow-up for outcome assessment, or administrative censoring 90 days after study enrollment closed. FINDINGS: We included 3652 newly HIV-diagnosed individuals; median age was 31 years (IQR: 25, 42), 2909 (79.7%) were male, 2057 (56.3%) were Black, 246 (6.7%) were Hispanic, 408 (11.2%) were residing in majority-rural areas at diagnosis, and 642 (17.6%) individuals received a late HIV diagnosis. Residents of majority-rural counties (adjusted risk ratios [aRR] = 1.39, 95% confidence intervals [CI]: 1.16-1.67) and Hispanic individuals (aRR = 1.87, 95% CI: 1.50-2.33) had an increased likelihood of receiving a late diagnosis after controlling for race/ethnicity, age, and year of HIV diagnosis. CONCLUSIONS: Rural residence and Hispanic ethnicity were associated with an increased risk of receiving a late HIV diagnosis in Tennessee. Future HIV testing and prevention efforts should be adapted to the needs of these vulnerable populations.

Characterizing residential mobility among people with HIV in Tennessee and its impact on HIV care outcomes.

OBJECTIVE: Our objective was to assess the prevalence and patterns of mobility among people with HIV (PWH) in Tennessee and its impact on HIV care outcomes. DESIGN: Retrospective cohort study. METHODS: We combined residential address and HIV surveillance data from PWH in Tennessee from 2016 to 2018. Using Poisson regression, we estimated associations between in-state mobility (change in address or total miles moved) in 1 year and outcomes in the subsequent year; retention: having two CD4 + /HIV RNA values (labs) in a calendar year at least 3 months apart, loss to follow-up (LTFU): having labs at baseline but not the subsequent year, and viral suppression: HIV RNA less than 200 copies/ml. We applied a kernel density estimator to origin-destination address lines to visualize mobility patterns across demographic subgroups. RESULTS: Among 17 428 PWH [median age 45 years (interquartile range; IQR 34-53)], 6564 (38%) had at least one move. Median miles moved was 8.9 (IQR 2.6-143.4)). We observed in-state movement between major cities (Chattanooga, Knoxville, Memphis and Nashville) and out-of-state movement to and from Georgia and Florida. Having at least one in-state move was associated with a decreased likelihood of retention [adjusted relative risk (aRR) = 0.91; 95% confidence interval (CI) 0.88-0.95], and an increased risk of LTFU (aRR = 1.17; 95% CI 1.04-1.31, two to three moves vs. none). Greater distance moved in-state was associated with decreased retention and increased LTFU (aRR = 0.53; 95% CI 0.49-0.58, aRR = 2.52; 95% CI 2.25-2.83, respectively for 1000 vs. 0 miles). There was no association between mobility and viral suppression. CONCLUSION: Mobility is common among PWH in Tennessee and is associated with initial poor engagement in HIV care.

Comparing Perceptions and Decisional Conflict Towards Participation in Cancer Clinical Trials Among African American Patients Who Have and Have Not Participated.

Despite efforts to increase the diversity of cancer clinical trial participants, African Americans are still underrepresented. While perceptions of participation have been studied, the objective of this study was to compare perceptions and decisional conflict towards clinical trials among African American cancer patients who have and have not participated in clinical trials to identify key areas for intervention. Post hoc analysis also looked at whether they had been asked to participate and how that group differed from those who did. Forty-one African American cancer patients were surveyed at two urban cancer centers and asked to agree/disagree to statements related to clinical trials perceptions (facilitators, barriers, beliefs, values, support, and helpfulness), and complete the O'Connor Decisional Conflict Scale. Independent-samples t tests compared participants by clinical trials participation status; 41% had participated in a clinical trial. Results revealed significant perceptual differences among the groups in three main areas: helpfulness of clinical trials, facilitators to participate in clinical trials, and barriers to participating in clinical trials. Post hoc analysis indicated that those who were not asked about clinical trials and had not participated differed significantly in all areas compared with participants. Additionally, clinical trial participants reported significantly lower decisional conflict in most items compared with both those who had and had not be asked to participate. These differences can give practitioners clues as to how to bridge the gap from non-participator to participator. Messages could then be infused in the clinician-patient dyad when introducing and discussing clinical trials, potentially providing a more effective strategy for communicating with African American patients.

Contextual Predictors of Engagement in a Tailored mHealth Intervention for Adolescent and Young Adult Cancer Survivors.

BACKGROUND: Despite the promise of mobile health (mHealth), engagement is often too low for durable health behavior change, and little is known regarding why certain individuals abandon mHealth tools. PURPOSE: Guided by a mHealth engagement framework, we evaluated contextual predictors of objective engagement with an app for adolescents and young adults (AYA) who survived cancer. METHODS: One hundred and ten AYA survivors (M age = 20.5, 43% female, 30% racial/ethnic minority) were randomized to receive a disease self-management app that delivered 1-2 tailored messages/day for 16 weeks, and contained a survivorship care plan (SCP). Demographic, disease, psychosocial, and setting characteristics were examined as predictors of three objective engagement outcomes: (a) % of active app days, (b) % of messages read, and (c) viewed SCP in the app versus not. A subsample (n = 10) completed qualitative interviews to further assess engagement barriers. RESULTS: Self-reported uninterrupted app access (ß = -0.56, p < .001), iPhone (vs. Android) ownership (ß = 0.30, p < .001), and receiving the intervention in the summer (ß = -0.20, p = .01) predicted more active days. Lower depressed mood (ß = -0.30, p = .047) and uninterrupted app access (ß = -0.50, p < .001) predicted more messages read. Qualitatively, technical glitches and competing priorities were described as engagement barriers, whereas certain types of messages (e.g., health goal messages) were perceived as engaging. Among participants who had uninterrupted app access (n = 76), higher baseline motivation to change, better health perceptions, using the app during the summer, and iPhone ownership predicted higher engagement. CONCLUSIONS: Findings demonstrate the importance of comprehensively assessing and planning for multi-level ecological determinants of mHealth engagement in future trials. CLINICALTRIALS.GOV IDENTIFIER: NCT03363711.

Acceptability and feasibility of survivorship care plans and an accompanying mobile health intervention for adolescent and young adult survivors of childhood cancer.

BACKGROUND: Self-management interventions for adolescent and young adult (AYA) survivors of childhood cancer are needed. The present study reports on the acceptability and feasibility of delivering survivorship care plans (SCPs) and an accompanying app to AYA. PROCEDURE: AYA (n = 224) ages 15-29 who completed treatment for cancer were randomized and received a digital SCP only or an SCP plus a mobile app intended to enhance self-management. For 16 weeks, the app delivered one to two daily messages complementing information in their SCP and tailored based on age, treatment, and health goal. Data are presented on feasibility, self-reported acceptability (including satisfaction and perceived benefits) and its relationship to app engagement (for those in app group), and feedback from qualitative interviews conducted with 10 AYA. RESULTS: The SCP and app proved feasible as evidenced by high recruitment and retention, access to technology, time analysis, moderate app engagement, and minimal technical issues. However, 12% reported never reading the SCP and 8% never used the app. The app and SCP were acceptable to AYA, and SCP acceptability ratings did not differ between groups. For those with the app, acceptability was positively related to message engagement. AYA recommended enhanced individualization and design features of the SCP and app. CONCLUSIONS: Results support the use of tailored SCPs and mobile health interventions for most AYA, as well as the need for further refinement and research. Delivery of SCPs and digital interventions are acceptable and feasible to AYA survivors, and may help promote health-related knowledge and survivorship self-management.

Exploring the Engagement of Racial and Ethnic Minorities in HIV Treatment and Vaccine Clinical Trials: A Scoping Review of Literature and Implications for Future Research.

HIV disproportionately impacts US racial and ethnic minorities but they participate in treatment and vaccine clinical trials at a lower rate than whites. To summarize barriers and facilitators to this participation we conducted a scoping review of the literature guided by the Preferred Reporting Items for Systematic Review and Meta-Analyses (PRISMA) guidelines. Studies published from January 2007 and September 2019 were reviewed. Thirty-one articles were identified from an initial pool of 325 records using three coders. All records were then assessed for barriers and facilitators and summarized. Results indicate that while racial and ethnic minority participation in these trials has increased over the past 10 years, rates still do not proportionately reflect their burden of HIV infection. While many of the barriers mirror those found in other disease clinical trials (e.g., cancer), HIV stigma is a unique and important barrier to participating in HIV clinical trials. Recommendations to improve recruitment and retention of racial and ethnic minorities include training health care providers on the importance of recruiting diverse participants, creating interdisciplinary research teams that better represent who is being recruited, and providing culturally competent trial designs. Despite the knowledge of how to better recruit racial and ethnic minorities, few interventions have been documented using these strategies. Based on the findings of this review, we recommend that future clinical trials engage community stakeholders in all stages of the research process through community-based participatory research approaches and promote culturally and linguistically appropriate recruitment and retention strategies for marginalized populations overly impacted by HIV.

Using theory and user-centered design in digital health: The development of the mychoice communication tool to prepare patients and improve informed decision making regarding clinical trial participation.

OBJECTIVE: Designing salient digital health interventions requires theoretically-based formative research and user-center design with stakeholder input throughout impacting content and technology design. mychoice is a theory-based, stakeholder-guided digital health tool to improve clinical trial informed decision making, particularly among African American patients. METHODS: mychoice was developed by (1) mixed-methods formative research, including in-depth interviews (n=16) and surveys (N=41) with African American cancer patients who had and had not participated in a clinical trial; (2) e-tool design process including perceptual mapping analysis to prioritize messages, multi-disciplinary team and stakeholder input; and (3) iterative production and user testing. RESULTS: Interview findings showed that clinical trial participants expressed more positive attributes about and an openness to consider clinical trials, even though they expressed common concerns such as "fear of being a guinea pig". Survey results indicated that clinical trial participants expressed they had been given information to make the decision (P = .001), while those who had not more frequently reported (P > .001) that no one had talked to them about trials. Perceptual mapping indicated that values such as "helping find a cure" or "value to society" had little resonance to those who had not participated, providing message strategy for prototype development. User testing of the tool resulted in modifications; the most significant was the adaptation to a multi-cultural version. CONCLUSIONS: With the promise of digital health interventions, theory-guided, user-centered and best practice development is critical and mychoice serves as an example of the application of these principles.

Take Charge, Get Cured: The development and user testing of a culturally targeted mHealth decision tool on HCV treatment initiation for methadone patients.

OBJECTIVE: This paper describes the development of a mobile health tool to facilitate Hepatitis C (HCV) treatment decision making in methadone patients. METHODS: Using an iterative, formative evaluation framework, we used commercial marketing techniques to create 3D maps of survey data to develop culturally relevant messaging that was concept tested. The resulting tool was then user tested and results were used to modify the tool. RESULTS: The "Take Charge, Get Cured" tool was developed with surveys (n = 100), perceptual mapping analysis, concept testing (n = 5), and user testing (n = 10). "Think aloud" sessions were audio recorded and surveys given. Patients thought the goal of the tool was to encourage treatment and it was aimed to the needs of methadone patients. Means of 6.7-7 (on a 7 point scale) were observed for survey items related to ease of use, content, and satisfaction. CONCLUSION: The iterative development was essential to ensuring a culturally targeted tool, specific to the needs of HCV + methadone patients. There was a high level of acceptance for the tool. PRACTICE IMPLICATIONS: Our study indicates that using a formative evaluation strategy is essential for development of highly targeted patient communication, especially in hard-to-reach populations.

Mapping the Barriers and Facilitators of HCV Treatment Initiation in Methadone Maintenance Therapy Patients: Implications for Intervention Development.

An estimated 70-90% of current methadone users have Hepatitis C (HCV). Current treatments have few side effects and can cure infection in 8-12 weeks, but less than 10% of methadone patients initiate treatment. Engaging this group in treatment is an important strategy to lower both morbidity and mortality from liver disease and eliminate a significant reservoir of HCV in communities. To understand how to address this treatment gap we used commercial marketing techniques called perceptual mapping and vector message modeling to analyze survey data from 100 HCV+ methadone patients from four centers in Philadelphia. Results were used to understand barriers and facilitators to treatment initiation and to devise targeted message strategies to adapt to a mobile health communication intervention. Results indicate that focusing on how treatment can make one feel "in charge", positive interactions with healthcare providers, the positive attributes of the new vs. old HCV treatments, and providing strategies to address tangible barriers to getting treatment, would be important to address in a communication intervention. These marketing methods allow for focusing on specific variables to "move" the group toward a treatment decision, making them an innovative technique to use in developing highly targeted health communication messages.

How Do Low-Literacy Populations Perceive "Dirty Bombs"? Implications for Preparedness Messages.

Potential terror events such as "dirty bombs" could have significant public health effects, but little is known about how low-literacy populations perceive dirty bombs, their trust in public health or government officials to provide credible information, and their willingness to comply with recommended actions. We surveyed 50 low-literacy adults from a large urban center; they were mostly members of ethnic minority groups. We used unique social marketing methods-perceptual mapping and vector message modeling-to create 3-dimensional models that reflected respondents' knowledge of what a dirty bomb is, their intended behaviors should one occur, and their concerns about complying with "shelter in place" recommendations. To further understand individual variations in this at-risk group, a k-means cluster analysis was used to identify 3 distinct segments, differing on trust of local authorities and their emergency response, willingness to comply with emergency directives, and trust of information sources. Message strategies targeting each segment were developed to focus on concepts important to moving the groups toward a "shelter in place" behavior, revealing key differences in how best to communicate with risk communication. We discuss how these methods helped elucidate specific differences in each segment's understanding of and likely response during the event of a "dirty bomb" and how these techniques can be used to create more effective message strategies targeted to these groups.

Understanding help-seeking intentions in male military cadets: An application of perceptual mapping.

BACKGROUND: Research suggests that men are less likely to seek help for depression, substance abuse, and stressful life events due to negative perceptions of asking for and receiving help. This may be exacerbated in male military cadets who exhibit higher levels of gender role conflict because of military culture. METHODS: This exploratory study examined the perceptions of 78 male military cadets toward help-seeking behaviors. Cadets completed the 31-item Barriers to Help Seeking Scale (BHSS) and a component factor analysis was used to generate five composite variables and compare to validated factors. Perceptual mapping and vector modeling, which produce 3-dimensional models of a group's perceptions, were then used to model how they conceptualize help-seeking. RESULTS: Factor analysis showed slightly different groupings than the BHSS, perhaps attributed to different characteristics of respondents, who are situated in a military school compared to general university males. Perceptual maps show that cadets perceive trust of doctors closest to them and help-seeking farthest, supporting the concept that these males have rigid beliefs about having control and its relationship to health seeking. Differences were seen when comparing maps of White and non-White cadets. White cadets positioned themselves far away from all variables, while non-White cadets were closest to "emotional control". CONCLUSION: To move these cadets toward help-seeking, vector modeling suggests that interventions should focus on their general trust of doctors, accepting lack of control, and decreasing feelings of weakness when asking for help. For non-White cadets a focus on self-reliance may also need to be emphasized. Use of these unique methods resulted in articulation of specific barriers that if addressed early, may have lasting effects on help-seeking behavior as these young men become adults. Future studies are needed to develop and test specific interventions to promote help-seeking among military cadets.

Trend Analyses of Users of a Syringe Exchange Program in Philadelphia, Pennsylvania: 1999-2014.

This study examines trends of injection drug users' (IDUs) use of a Philadelphia, Pennsylvania, syringe exchange program (SEP) from 1999 to 2014, including changes in demographics, drug use, substance abuse treatment, geographic indicators, and SEP use. Prevention Point Philadelphia's SEP registration data were analyzed using linear regression, Pearson's Chi square, and t-tests. Over time new SEP registrants have become younger, more racially diverse, and geographically more concentrated in specific areas of the city, corresponding to urban demographic shifts. The number of new registrants per year has decreased, however syringes exchanged have increased. Gentrification, cultural norms, and changes in risk perception are believed to have contributed to the changes in SEP registration. Demographic changes indicate outreach strategies for IDUs may need adjusting to address unique barriers for younger, more racially diverse users. Implications for SEPs are discussed, including policy and continued ability to address current public health threats.