OBJECTIVE: Alcohol use can worsen attention-deficit/hyperactivity disorder (ADHD) symptoms, interfere with treatment, and worsen outcomes. Our objective was to describe parental perceptions of alcohol use for their adolescents with ADHD. METHODS: Parents of adolescents with ADHD completed an online survey about perceptions of adolescent alcohol use for adolescents with ADHD. We described the level of parental concern about the impacts of alcohol use on their adolescent's functioning. We assessed whether specific covariates were associated with the level of parental concern. RESULTS: Of 290 parents who completed the survey, 96.5% were women, and 66.1% had an educational attainment of college degree or higher. Most adolescents (75.4%) took ADHD medication, and 59.9% had comorbid anxiety or depression. Almost one-third (30.3%) of parents perceived that their adolescent was more likely to use alcohol because of ADHD, whereas 34.8% of parents disagreed with this and 34.8% of parents were neutral. Parents who suspected their adolescent regularly used alcohol were less likely to report concern about the impact of alcohol on their adolescent's school performance or ADHD medication effectiveness compared with parents who did not suspect regular adolescent alcohol use. Almost half of the parents (48.5%) did not report discussing the impact of alcohol use on ADHD with their adolescent. CONCLUSION: Many parents of adolescents with ADHD do not understand the unique risks of alcohol use for their adolescents. In addition, if alcohol use harm is not obvious, parents may not perceive there to be concerns about alcohol use on functioning. Parental education about alcohol use and ADHD is needed.
Background: Youth 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.
Methods: Eligible 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.
Results: Among 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.
Conclusions: For 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.
Introduction: Harnessing engagement in online searching and social media may provide complementary information for monitoring alcohol use, informing prevention and policy evaluation, and extending knowledge available from national surveys.
Methods: Relative search volumes for 7 alcohol-related keywords were estimated from Google Trends (data, 2014-2017), and the proportion of alcohol use-related Twitter posts (data, 2014-2015) was estimated using natural language processing. Searching/posting measures were created for all 50 U.S. states plus Washington, D.C. Survey reports of alcohol use and summaries of state alcohol policies were obtained from the Behavioral Risk Factor Surveillance System (data, 2014-2016) and the Alcohol Policy Scale. In 2018-2019, associations among searching/posting measures and same state/year Behavioral Risk Factor Surveillance System reports of recent (past-30-day) alcohol use and maximum number of drinks consumed on an occasion were estimated using logistic and linear regression, adjusting for sociodemographics and Internet use, with moderation tested in regressions that included interactions of select searching/posting measures and the Alcohol Policy Scale.
Results: Recent alcohol use was reported by 52.93% of 1,297,168 Behavioral Risk Factor Surveillance System respondents, which was associated with all state-level searching/posting measures in unadjusted and adjusted models (p<0.0001). Among drinkers, most searching/posting measures were associated with maximum number of drinks consumed (p<0.0001). Associations varied with exposure to high versus low levels of state policy controls on alcohol.
Conclusions: Strong associations were found among individual alcohol use and state-level alcohol-related searching/posting measures, which were moderated by the strength of state alcohol policies. Findings support using novel personally generated data to monitor alcohol use and possibly evaluate effects of alcohol control policies.
BACKGROUND AND OBJECTIVES: Youth with chronic physical conditions (CPCs) may be at greater risk for developing chronic mental health conditions (MHCs), and limitations in the ability to engage in developmentally appropriate activities may contribute to the risk of MHCs among youth with CPCs. We compared the risk of incident MHCs in youth with and without CPCs and explored whether activity limitations contribute to any such association. METHODS: The 2003-2014 Medical Expenditure Panel Survey provided a nationally representative cohort of 48 572 US youth aged 6 to 25 years. We calculated the 2-year cumulative incidence of MHCs overall and by baseline CPC status. Cox proportional hazard models were used to estimate the association between CPCs and incident MHCs, adjusting for sociodemographic characteristics. Stepwise models and the Sobel test evaluated activity limitations as a mediator of this relationship. RESULTS: The 2-year cumulative incidence of MHCs was 7.8% overall, 11.5% in youth with CPCs (14.7% of sample), and 7.1% in those without. The adjusted risk of incident MHCs was 51% greater (adjusted hazard ratio 1.51; 95% confidence interval 1.30-1.74) in youth with CPCs compared with those without. Activity limitations mediated 13.5% of this relationship ( < .001). CONCLUSIONS: This nationally representative cohort study supports the hypotheses that youth with CPCs have increased risk for MHCs and that activity limitations may play a role in MHC development. Youth with CPCs may benefit from services to bolster their ability to participate in developmentally important activities and to detect and treat new onset MHCs.
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.
PURPOSE: While education-based disparities in health are common, the extent to which chronic conditions contribute to education gaps and to consequent health disparities is not fully understood. As such, we sought to investigate educational aspirations, expectations, and attainment among youth with and without chronic conditions and to determine if these relationships mediated subsequent disparities in health and well-being. METHODS: Longitudinal data on 3,518 youths are from the 1997-2013 Panel Study of Income Dynamics, a population-based survey. Multivariate regression was used to assess disparities in educational aspirations, expectations, and attainment by chronic conditions and the subsequent effects on health and well-being, adjusting for important potential confounders. RESULTS: Youth with chronic medical conditions (YCMCs) did not report significantly lower educational aspirations than their healthy peers; however, YCMC reported lower expectations for their educational attainment and fewer YCMC had earned their desired degree by the end of follow-up (e.g., ≥bachelor's degree: 19.9% for YCMC vs. 26.0% for peers, p < .05). YCMC reported significantly worse general health, lower life satisfaction, and lower psychological well-being in young adulthood than did their healthy peers. These disparities persisted after adjustment for confounders; the association between chronic disease and health was partially, but significantly, mediated by actual educational attainment. CONCLUSIONS: Findings suggest an important risk mechanism through which YCMC may acquire socioeconomic disadvantage as they develop and progress through educational settings. Disproportionate lags in education, from expectation to attainment, may in turn increase YCMC's susceptibility to poor health and well-being in the future.
OBJECTIVE: Adolescents with attention-deficit/hyperactivity disorder (ADHD) are at increased risk for alcohol and marijuana use. This study's objective is to describe adolescents' ADHD-specific reasons for marijuana use, knowledge of ADHD-specific alcohol risks, and reported subspecialty provider messaging/education regarding alcohol use among adolescents with ADHD. METHODS: Youths with ADHD aged 12 to 18 years completed a survey about alcohol and marijuana use, ADHD-specific reasons for marijuana use, knowledge of ADHD-specific alcohol risks, and reported provider messaging/education regarding alcohol use. We assessed knowledge toward substance use using descriptive statistics. We used χ and t tests to determine whether knowledge or provider messaging/education differed by sociodemographic characteristics. RESULTS: Of the 96 participants, 61.5% were male, average age was 15.7 years; 31.3% reported past-year alcohol use and 20.8% reported past-year marijuana use. The majority (65.2%) said "no/don't know" to both "Can alcohol make ADHD symptoms worse?" and "Can alcohol interfere or get in the way of the medications you take?" Older participants were more likely to correctly answer the medication question "yes." Despite most (74%) participants reporting that their provider asked about alcohol use, few youth reported that their providers gave specific messages/education that alcohol could make ADHD symptoms worse (9.4%) or interfere with ADHD medications (14.6%); older participants and past-year alcohol users were more likely to have received these alcohol-specific messages. CONCLUSION: Many youth with ADHD are unaware of the risks of alcohol use in relation to ADHD and providers are not consistently discussing these risks in the context of clinical ADHD care.
According to the Centers for Disease Control and Prevention, about half of all adults—117 million people—in the United States have one or more chronic illnesses.1 In addition, persons with chronic illness account for more than 85% of total health care expenditures.2 The demands of chronic illness care place a heavy burden on patients and families to effectively self-manage, to interact consistently and productively with the health care system, and to make lifestyle decisions that promote health.
Widespread use of Internet and mobile technologies provides opportunities to gather health-related information to complement data generated through traditional healthcare and public health systems. These personally generated data (PGD) are increasingly viewed as informative of the patient experience of conditions, symptoms, treatments, and side effects. Behavior, sentiment, and disease patterns can be discerned from mining unstructured PGD in text, image, or metadata form, and from analyzing PGD collected via structured, opt-in, and web-enabled platforms and devices, including wearables. Models that employ PGD from distributed cohorts are being used increasingly to measure public health outcomes; moreover, PGD collection forms the centerpiece of important new federal investments into personalized medicine that seek to energize vast cohorts in donating data via apps and devices. PGD offer the opportunity to inform gap areas of health research through high-resolution views into spatial, temporal, or demographic features. However, when PGD are used to answer epidemiologic questions, it is not always clear what constitutes the population at risk (PAR), or the denominator, challenging researchers’ abilities to make inferences, draw comparisons, and evaluate change. Because of this, initial PGD studies have tended toward numerator-only investigations; however, the field is advancing. This report summarizes issues related to specifying PAR and denominator metrics when using PGD for health research and outlines approaches for resolving these issues using design and analytic strategies.