Impact of alcohol use disorder severity on human immunodeficiency virus (HIV) viral suppression and CD4 count in three international cohorts of people with HIV.

Alcohol use has been linked to worse human immunodeficiency virus (HIV) immunologic/virologic outcomes, yet few studies have explored the effects of alcohol use disorder (AUD). This study assessed whether AUD severity is associated with HIV viral suppression and CD4 count in the three cohorts of the Uganda Russia Boston Alcohol Network for Alcohol Research Collaboration on HIV/AIDS (URBAN ARCH) Consortium. People with HIV (PWH) in Uganda (n = 301), Russia (n = 400), and Boston (n = 251), selected in-part based on their alcohol use, were included in analyses. Logistic and linear regressions were used to assess the cross-sectional associations between AUD severity (number of DSM-5 diagnostic criteria) and (1) HIV viral suppression, and (2) CD4 count (cells/mm <sup>3</sup> ) adjusting for covariates. Analyses were conducted separately by site. The proportion of females was 51% (Uganda), 34% (Russia), and 33% (Boston); mean age (SD) was 40.7 (9.6), 38.6 (6.3), and 52.1 (10.5), respectively. All participants in Uganda and all but 27% in Russia and 5% in Boston were on antiretroviral therapy. In Uganda, 32% met criteria for AUD, 92% in Russia, and 43% in Boston. The mean (SD) number of AUD criteria was 1.6 (2.4) in Uganda, 5.6 (3.3) in Russia, and 2.4 (3.1) in Boston. Most participants had HIV viral suppression (Uganda 92%, Russia 57%, Boston 87%); median (IQR) CD4 count was 673 (506, 866), 351 (201, 542), and 591 (387, 881), respectively. In adjusted models, there were no associations between AUD severity and HIV viral suppression: adjusted odds ratios (AOR) (95%CI) per 1 additional AUD criterion in Uganda was 1.08 (0.87, 1.33); Russia 0.98 (0.92, 1.04); and Boston 0.95 (0.84, 1.08) or CD4 count: mean difference (95%CI) per 1 additional criterion: 5.78 (-7.47, 19.03), -3.23 (-10.91, 4.44), and -8.18 (-24.72, 8.35), respectively. In three cohorts of PWH, AUD severity was not associated with HIV viral suppression or CD4 count. PWH with AUD in the current era of antiretroviral therapy can achieve virologic control

How Returning Aggregate Research Results Impacts Interest in Research Engagement and Planned Actions Relevant to Health Care Decision Making: Cohort Study.

BackgroundCollection of patient-reported outcomes measures (PROs) may augment clinical data and inform health research, improving care, yet approaches to sustaining interest among patient cohorts in research participation are needed. One approach may involve returning aggregate research results (ARRs), which may help patients contextualize personal experiences, prompt conversations with providers or family, and encourage information seeking. This model has been demonstrated for Web-based patient-centered registries. Studies with clinical cohorts may further elucidate the model, its impacts on interest in research participation and planned actions, and potential for participants to experience this as helpful or harmful-gap areas.ObjectiveWe sought to investigate the impacts of returning ARRs comprising summaries of PROs and clinical metrics to parents of children with rheumatic disease, assessing interest in future research participation among parents who viewed ARRs and plans for acting on returned information. Further, we sought to investigate reactions to viewing ARRs and how these reactions impacted planned actions.MethodsClinical and PRO data were obtained about children in a national clinical disease registry, summarized, and processed into annotated infographics, comprising ARRs for children's parents. Parents who viewed ARRs (n=111) were surveyed about the information's perceived value and their reactions. Reaction patterns were summarized using principal components analysis (PCA), and associations among reaction patterns and interest in research participation and planned actions were estimated using multivariate logistic regression.ResultsParental endorsement of the value of ARRs for understanding their child's condition and making care decisions was high (across 10 topics for which ARRs were shared, 42.2%-77.3% of the parents reported information was "very valuable"). Most (58/111, 52.3%) parents reported being more interested in participating in research after viewing ARRs, with the remainder reporting that their interest levels were unchanged. Reactions to viewing ARRs reflected experiencing validation/affirmation and information burden based on PCA. Reactions were not associated with child demographic or clinical characteristics and PROs, except that parents from households with less education reported greater information burden than those from more educated households (P=.007). In adjusted models, parents with higher validation/affirmation scores had increased odds of reporting heightened interest in research participation (adjusted odds ratio [AOR] 1.97, 95% CI 1.18-3.30), while higher information burden scores were associated with decreased odds of planned discussions with their child (AOR 0.59, 95% CI 0.36-0.95) and increased odds of planned discussions with providers (AOR 1.75, 95% CI 1.02-3.00).ConclusionsReturning ARRs may foster a "virtuous cycle" of research engagement, especially where ARRs are experienced favorably and affect plans to share and discuss ARRs in support of a child's chronic disease care and treatment. Reactions to ARRs vary with education level, underscoring the need for attention to equity for this model

Alcohol Use Behaviors and Reasons to Abstain From or Limit Drinking Among Medically Vulnerable Youth.

BackgroundYouth with chronic medical conditions (YCMC) use alcohol at levels similar to their healthy peers but face elevated risk for adverse health consequences. As salient reasons to abstain from or limit drinking (RALD) among YCMC are unknown, we sought to identify clusters of RALD and test associations with use behaviors.MethodsEligible YCMC (ages 9-18) recruited from outpatient clinics reported their use behaviors and importance of potential RALD. Cluster analysis was used to discern RALD patterns, which were examined as predictors of alcohol use using multivariate regression.ResultsAmong 398 participants, 30.9% reported past year alcohol use. Concerns about impacts on medications, school, and disease status were the most frequently endorsed RALD; prior negative experiences with alcohol and family history were the least frequently endorsed. Five RALD clusters were identified for all YCMC and 2 for recent drinkers. Compared to the cluster with high endorsement of multiple general and health-related RALD, those predominantly citing concerns about addiction and those not strongly endorsing any RALD consistently reported greater alcohol use. Among recent drinkers, the cluster characterized by low concern across multiple RALD also consistently reported greater alcohol use compared to their counterparts expressing moderate concern.ConclusionsFor YCMC, RALD are complex but endorsement of multiple general and health-related RALD is associated with less use, and health concerns are especially prevalent. More research is needed to understand how salient RALD can inform tailored interventions that aim to delay and reduce substance use and improve health outcomes for YCMC

Clinical Trial Recruitment and Retention of College Students with Type 1 Diabetes via Social Media: An Implementation Case Study.

BackgroundWe sought to quantify the efficiency and acceptability of Internet-based recruitment for engaging an especially hard-to-reach cohort (college-students with type 1 diabetes, T1D) and to describe the approach used for implementing a health-related trial entirely online using off-the-shelf tools inclusive of participant safety and validity concerns.MethodWe recruited youth (ages 17-25 years) with T1D via a variety of social media platforms and other outreach channels. We quantified response rate and participant characteristics across channels with engagement metrics tracked via Google Analytics and participant survey data. We developed decision rules to identify invalid (duplicative/false) records (N = 89) and compared them to valid cases (N = 138).ResultsFacebook was the highest yield recruitment source; demographics differed by platform. Invalid records were prevalent; invalid records were more likely to be recruited from Twitter or Instagram and differed from valid cases across most demographics. Valid cases closely resembled characteristics obtained from Google Analytics and from prior data on platform user-base. Retention was high, with complete follow-up for 88.4%. There were no safety concerns and participants reported high acceptability for future recruitment via social media.ConclusionsWe demonstrate that recruitment of college students with T1D into a longitudinal intervention trial via social media is feasible, efficient, acceptable, and yields a sample representative of the user-base from which they were drawn. Given observed differences in characteristics across recruitment channels, recruiting across multiple platforms is recommended to optimize sample diversity. Trial implementation, engagement tracking, and retention are feasible with off-the-shelf tools using preexisting platforms

Alcohol Use and Alcohol-Interactive Medications Among Medically Vulnerable Youth.

Despite their medical vulnerability, youth with chronic medical conditions (YCMCs) drink at levels commensurate with healthy youth. However, information about the prevalence of alcohol use among YCMCs who take alcohol-interactive (AI) medications is scant. To address gaps and inform interventions, we quantified simultaneous exposure to alcohol use and AI medications among YCMCs, hypothesizing that AI exposure would be associated with lower alcohol consumption and mediated by perceptions of alcohol-medication interference. Adolescents with type 1 diabetes, juvenile idiopathic arthritis, moderate persistent asthma, cystic fibrosis, attention-deficit/hyperactivity disorder, or inflammatory bowel disease completed an electronic survey. We measured the prevalence of exposure to AI medications and the associations with past-year alcohol use as well as binge drinking and total consumption volume in the past 3 months using multivariate regression to estimate the odds of alcohol use given AI medication exposure and perceptions of interference. Of 396 youth, 86.4% were on AI medications, of whom, 35.4% reported past-year alcohol use (46.3% among those who were not on AI medications). AI medication use was associated with 43% lower odds of past-year alcohol use (adjusted odds ratio: 0.57; 95% confidence interval: 0.39-0.85) and lower total consumption (β = -.43; SE = 0.11; P < .001). Perceptions of alcohol-medication interference partially mediated the relationship between AI medication exposure and past-year alcohol use (Sobel test P = .05). Many YCMCs reported using alcohol; however, drinking was less likely among those who were taking AI medications. Perceptions about alcohol-medication interference mediated the association between drinking and AI medication exposure, suggesting the potential salience of interventions that emphasize alcohol-related risks

Psychoeducational Messaging to Reduce Alcohol Use for College Students With Type 1 Diabetes: Internet-Delivered Pilot Trial

BackgroundCollege environments promote high-volume or binge alcohol consumption among youth, which may be especially harmful to those with type 1 diabetes (T1D). Little is known about the acceptability and effectiveness of interventions targeting reduced alcohol use by college students with T1D, and it is unclear whether intervention framing (specifically, the narrator of intervention messages) matters with respect to affecting behavior change. Interventions promoted by peer educators may be highly relatable and socially persuasive, whereas those delivered by clinical providers may be highly credible and motivating. ObjectiveThe aim of this study is to determine the acceptability and impacts of an alcohol use psychoeducational intervention delivered asynchronously through web-based channels to college students with T1D. The secondary aim is to compare the impacts of two competing versions of the intervention that differed by narrator (peer vs clinician). MethodsWe recruited 138 college students (aged 17-25 years) with T1D through web-based channels and delivered a brief intervention to participants randomly assigned to 1 of 2 versions that differed only with respect to the audiovisually recorded narrator. We assessed the impacts of the exposure to the intervention overall and by group, comparing the levels of alcohol- and diabetes-related knowledge, perceptions, and use among baseline, immediately after the intervention, and 2 weeks after intervention delivery. ResultsOf the 138 enrolled participants, 122 (88.4%) completed all follow-up assessments; the participants were predominantly women (98/122, 80.3%), were White non-Hispanic (102/122, 83.6%), and had consumed alcohol in the past year (101/122, 82.8%). Both arms saw significant postintervention gains in the knowledge of alcohol’s impacts on diabetes-related factors, health-protecting attitudes toward drinking, and concerns about drinking. All participants reported significant decreases in binge drinking 2 weeks after the intervention (21.3%; odds ratio 0.48, 95% CI 0.31-0.75) compared with the 2 weeks before the intervention (43/122, 35.2%). Changes in binge drinking after the intervention were affected by changes in concerns about alcohol use and T1D. Those who viewed the provider narrator were significantly more likely to rate their narrator as knowledgeable and trustworthy; there were no other significant differences in intervention effects by the narrator. ConclusionsThe intervention model was highly acceptable and effective at reducing self-reported binge drinking at follow-up, offering the potential for broad dissemination and reach given the web-based format and contactless, on-demand content. Both intervention narrators increased knowledge, improved health-protecting attitudes, and increased concerns regarding alcohol use. The participants’ perceptions of expertise and credibility differed by narrator. Trial RegistrationClinicalTrials.gov NCT02883829; https://clinicaltrials.gov/ct2/show/NCT02883829 International Registered Report Identifier (IRRID)RR2-10.1177/193229681983950

Adding patient-reported outcomes to a multisite registry to quantify quality of life and experiences of disease and treatment for youth with juvenile idiopathic arthritis.

Children with Juvenile Idiopathic Arthritis (JIA) often have poor health-related quality of life (HRQOL) despite advances in treatment. Patient-centered research may shed light on how patient experiences of treatment and disease contribute to HRQOL, pinpointing directions for improving care and enhancing outcomes. Parent proxies of youth enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry shared patient-reported outcomes about their child's HRQOL and experiences of disease and treatment burden (pain interference, morning stiffness, history of medication side effects and methotrexate intolerance). Contributions of these measures to HRQOL were estimated using generalized estimating equations accounting for site and patient demographics. Patients (N = 180) were 81.1% white non-Hispanic and 76.7% female. Mean age was 11.8 (SD = 3.6) years, mean disease duration was 7.7 years (SD = 3.5). Mean Total Pediatric Quality of Life was 76.7 (SD = 18.2). Mean pain interference score was 50.1 (SD = 11.1). Nearly one-in-five (17.8%) youth experienced >15 min of morning stiffness on a typical day, more than one quarter (26.7%) reported ≥1 serious medication side effect and among 90 methotrexate users, 42.2% met criteria for methotrexate intolerance. Measures of disease and treatment burden were independently negatively associated with HRQOL (all p-values <0.01). Negative associations among measures of treatment burden and HRQOL were attenuated after controlling for disease burden and clinical characteristics but remained significant. For youth with JIA, HRQOL is multidimensional, reflecting disease as well as treatment factors. Adverse treatment experiences undermine HRQOL even after accounting for disease symptoms and disease activity and should be assessed routinely to improve wellbeing

Adding patient-reported outcomes to a multisite registry to quantify quality of life and experiences of disease and treatment for youth with juvenile idiopathic arthritis

Background: Children with Juvenile Idiopathic Arthritis (JIA) often have poor health-related quality of life (HRQOL) despite advances in treatment. Patient-centered research may shed light on how patient experiences of treatment and disease contribute to HRQOL, pinpointing directions for improving care and enhancing outcomes. Methods: Parent proxies of youth enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry shared patient-reported outcomes about their child’s HRQOL and experiences of disease and treatment burden (pain interference, morning stiffness, history of medication side effects and methotrexate intolerance). Contributions of these measures to HRQOL were estimated using generalized estimating equations accounting for site and patient demographics. Results: Patients (N = 180) were 81.1% white non-Hispanic and 76.7% female. Mean age was 11.8 (SD = 3.6) years, mean disease duration was 7.7 years (SD = 3.5). Mean Total Pediatric Quality of Life was 76.7 (SD = 18.2). Mean pain interference score was 50.1 (SD = 11.1). Nearly one-in-five (17.8%) youth experienced >15 min of morning stiffness on a typical day, more than one quarter (26.7%) reported ≥1 serious medication side effect and among 90 methotrexate users, 42.2% met criteria for methotrexate intolerance. Measures of disease and treatment burden were independently negatively associated with HRQOL (all p-values <0.01). Negative associations among measures of treatment burden and HRQOL were attenuated after controlling for disease burden and clinical characteristics but remained significant. Conclusions: For youth with JIA, HRQOL is multidimensional, reflecting disease as well as treatment factors. Adverse treatment experiences undermine HRQOL even after accounting for disease symptoms and disease activity and should be assessed routinely to improve wellbeing. Electronic supplementary material The online version of this article (10.1186/s41687-017-0025-2) contains supplementary material, which is available to authorized users