PURPOSE: We seek to determine how youth with chronic medical conditions experience alcohol screening and counseling. METHODS: Adolescents with type I diabetes, juvenile idiopathic arthritis, moderate persistent asthma, cystic fibrosis, attention deficit hyperactivity disorder, or inflammatory bowel disease were surveyed. Descriptive statistics and regression analysis quantified rates of asking and counseling about alcohol. RESULTS: Of 390 participants (75.1% white/non-Hispanic, 51.8% female, average age 16.4 years), 70% reported being asked about their alcohol use by a healthcare provider, and 76% reported receiving at least one message regarding alcohol and health. Of past year drinkers, 54% disclosed use to their provider. Only 2.0% of youth reported receiving the message "I should not drink." CONCLUSIONS: Most youth with chronic medical conditions were asked and counseled about alcohol use although few heard unambiguous recommendations to avoid alcohol consumption.

BACKGROUND: We 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. METHOD: We 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). RESULTS: Facebook 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. CONCLUSIONS: We 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.

BACKGROUND: Given a rapidly changing policy landscape, we sought to characterize the effects of state marijuana laws on parents' views of marijuana use by their teenage children. METHODS: Data are from 595 respondents to a nationally administered, web-based survey of parents of adolescents (ages 13-18 years) with any of three chronic conditions (type 1 diabetes, rheumatic disease, attention-deficit/hyperactivity disorder). Multivariate ordinal logistic regression was used to model the effects of parents' reports of state cannabis laws on their views toward marijuana use by their child. RESULTS: While 89.9% said any marijuana use was risky for their child, 27.9% would approve of its use if prescribed as medicine. Parents reporting marijuana decriminalization (11.1%) were more amenable to teenage use, less concerned about how marijuana might impact their child's condition, more accepting of the safety of marijuana as medicine, and approved its use with a prescription. Parents reporting legal medical (35.6%) or recreational (5.7%) use were more likely to report that their child has tried or used marijuana regularly. Parents reporting legal recreational use were less likely to agree that marijuana has medical benefits for their child. CONCLUSIONS: Among parents of medically vulnerable children, perceiving state marijuana policies as more permissive is strongly associated with lower perceived riskiness of marijuana use for their children. State marijuana policies are changing with implications for how parents of medically vulnerable youth view and potentially govern marijuana use by their medically vulnerable children.

BACKGROUND: Collection 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. OBJECTIVE: We 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. METHODS: Clinical 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. RESULTS: Parental 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). CONCLUSIONS: Returning 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.

BACKGROUND: Uninsurance for young adults (YAs) was greatly reduced by the Affordable Care Act (ACA). However, reforms may not be equally beneficial for all YAs and certain policies may exacerbate, rather than resolve, pre-existing disparities. OBJECTIVE: To investigate inequalities in YAs' insurance coverage pre- (2000-2010) and post-federal health reforms (dependent coverage expansion, 2010-2013, and Medicaid/Marketplace expansions, 2014-2016), among a nationally representative sample. DESIGN: A difference-in-differences estimator (controlling for sociodemographics) was used to determine the effects of the ACA for young adults (ages 19-25) compared to adolescents (ages 13-18) and older YA (ages 26-30) counterparts; triple-difference estimators quantified differential policy effects by sociodemographics. PARTICIPANTS: Three hundred eighty-seven thousand six hundred thirty-five participants in the 2000-2016 National Health Interview Survey. MAIN MEASURES: Respondents reported their health insurance coverage types during the last 12 months, reasons uninsured, and detailed sociodemographics. KEY RESULTS: An adjusted difference-in-differences estimator quantified a 12.3 percentage point increase (p < 0.0001) in full-year coverage post-ACA for YAs compared to older counterparts, driven by increases in employer-sponsored private insurance while younger and older youth saw larger gains in Medicaid coverage. Triple-difference estimators identified subgroups experiencing less beneficial dependent coverage expansion effects, including females, lower socioeconomic status, non-citizens, non-English speakers, and several racial/ethnic minority groups. Later ACA reforms (Marketplace/Medicaid expansions) mitigated many of these widening disparities. CONCLUSION: While the ACA significantly impacted YA insurance coverage, these gains were not of equal magnitude for all YAs and disparities remain. As such, more work needs to be done to ensure optimal and equitable access to high-quality, affordable insurance for all YAs.

BACKGROUND AND OBJECTIVES: 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. METHODS: 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. RESULTS: 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; < .001). Perceptions of alcohol-medication interference partially mediated the relationship between AI medication exposure and past-year alcohol use (Sobel test = .05). CONCLUSIONS: 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.

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.
 

OBJECTIVE: To determine the effect of state-level dependent coverage expansion (DCE) with and without other state health reforms on exit from dependent coverage for adolescents and young adults (AYA). DATA SOURCES: Administrative longitudinal data for 131,542 privately insured AYA in Massachusetts (DCE with other reforms) versus Maine and New Hampshire (DCE without other reforms) across three periods: prereform (1/00-12/06), poststate reform (1/07-9/10), and postfederal reform (10/10-12/12). STUDY DESIGN: A difference-in-differences estimator was used to determine the rate of exit from dependent coverage, age at exit from dependent coverage, and re-uptake of dependent coverage among AYA in states with comprehensive reforms versus DCE only. PRINCIPAL FINDINGS: Implementation of DCE with other reforms was significantly associated with a 23 percent reduction in exit from dependent coverage among AYA compared to the reduction observed for DCE alone. Additionally, comprehensive reforms were associated with over two additional years of dependent coverage for the average AYA and a 33 percent increase in the odds of regaining dependent coverage after a prior loss. CONCLUSIONS: Findings suggest that an individual mandate and other reforms may enhance the effect of DCE in preventing loss of coverage among AYA.

Hypertension is a strong risk factor for cardiovascular disease and stroke. Focusing on identifying hypertension early, and getting blood pressure (BP) to goal preferably without the use of medication, is important for a multitude of reasons. Unfortunately, the prevalence of hypertension in younger adults is increasing.